Jump to content
Sign in to follow this  
  • entries
    25
  • comments
    203
  • views
    3,593

About this blog

Stroke questions

Entries in this blog

Debbyavery0

We are in uncharted territory dealing with daddy's diagnosis of vascular dementia. At least all of his agitation and aggressiveness are gone. His memory is much better and he has cracked a few jokes. Still no tv, and he is still running lights off. Everything I've read about vascular dementia states it coincides with Alzheimer's. I am hoping the neurologist can shed some light on how severe he is. I am also hoping the psychiatrist can give mama a definitive diagnosis. I feel better knowing what I am dealing with. It is good to have daddy back at the apartment. His sisters have finally settled down and realized sending him to Geri pshyc was our only choice. I stayed home today with a bad headache. Brittany brought he baby over and I watched her while brett took Brittany out to eat. I am about to go to bed. Mope everyone has a great night.

Debbyavery0

I am concerned. Daddy is showing some strange behaviors. Last week he told me he would have killed himself the night before but didn't have anything to do it with. Come to find out it was a dream. He told mama in front of Robbie he was going to take a knife to her. We hid the knives and scissors. I don't know if he was joking or not. He started this week telling Robbie he was going to kiss her if she didn't come to our Christmas party. Mama got upset. Yesterday he was kicking out at mama when she was standing in front of him. He connected with her once and she almost fell. Robbie chewed him out. Today he asked Robbie to marry him in front of mama and mama yelled at him. He laughed. Today mama and Robbie told him the great grandbaby was only coming to see him if he behaved. He informed me tonight that he didn't think they would come anyway. I approached mama about moving him to assisted living next door rather than independent living. Mama got very agitated and upset and begged me not to do that. I sent a message to the doctor to see if his meds need to be changed or something else. Does anyone have any suggestions? Apparently, I am the bad guy. They tell him they are going to call me when he does not behave. He seemed mad at me tonight. I talked to the hubs about my quitting work and taking care of them plus the grandbabies. The only problem is he is still unemployed. I am very torn as to what to do. I have a very good job but I am struggling with keeping up with everything. Tonight I am very discouraged. I wish we didn't have to wait until 1/12 to get in with the neurologist. I just need some answers as to how much brain damage daddy has from the stroke.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.
Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

Being a Caregiver

I thought I would take a break today from discussing daddy's stroke and just talk about my very limited experience as a caregiver. I just got my mind wrapped around the fact that my little mama has Alzheimers earlier in the summer. Daddy and I got her to the doctor and he put her on an anti-depressant, Alzheimer's medication and a tranquilizer. During this period, I would make periodic trips to the farm (90 miles from my house) and try to help as much as possible. My husband lost his job at the end of July. Once again, it took me a little time and a lot of prayer to wrap my mind around this new issue. When mama called me on the night of September 4th to say my dad was having a heart attack and throwing up blood, I really hoped she was overreacting due to her Alzheimer's. My husband and I drove the 45 miles to White County Medical and it became quite evident something traumatic had happened to his brain. I stayed up all night with him while my husband drove my mom back to the farm and picked up clothes and meds. I was scared and so hopeful that whatever was going on with daddy was just a temporary thing. I let my work know I would not be in and spent the entire day trying to keep daddy in bed. He rotated between catatonic and rambling. He would try to get out of bed. I think he needed to go to the bathroom but couldn't put it all together. He is extremely strong so it was all I could do to keep him in bed. The hospital felt he was a high fall risk. I asked about restraining him, and they don't do that. I spent Friday night with both him and mama. They brought in this chair to sleep on that I nicknamed the beast. I would dose and his bed alarm would go off. I would jump up and try to keep him in bed. Saturday rolled around and he was really rambling. He would still rotate between catatonic stages and very loud rambling. At times he would laugh uncontrollably. He did not cry which I understand is common for stroke victims. By now I am beyond exhausted and starting to get very frustrated with the doctors at the hospital. They keep telling me he has encephalopathy due to his pneumonia and low sodium. I want him transferred to big Baptist in little rock because he needs a neurologist. People visited all day on Saturday and I had periods of crying. My aunts stayed with daddy so I could go home and get cleaned up and take a nap. I was gone about 3 hours and they apparently had a time keeping him in bed. Saturday night went about the same as Friday night. Daddy was talking out of his head and we got very little sleep. Sunday rolled around and he had a ton of visitors. My precious uncle volunteered to spend Sunday night and I let him. I went home and crashed. I am ashamed but I allowed myself a pity party. I cried for a couple of hours and then got really mad at the hubs because I didn't feel like he was supporting me. I reminded him of how I took care of his dad the previous year before he died, and I told him I felt very alone. He quit being so grumpy after that. I think he was really missing me and worried about daddy. I decided my anger was not accomplishing anything so I decided to pray a thankful prayer that I still had my dad. He has always had a lot of respect for my dad. I got up Monday morning and headed back to the hospital. Uncle Tommy didn't get any sleep. He left right after I got there. Monday marked the day that I got really mad at the hospital. I begged and pleaded to get him moved and thought I had it all worked out. A different hospitalist came in with a chip on his shoulder and informed me daddy had not had a stroke. He told me all stroke victims have a droopy mouth. He told me he was going to release daddy to go home as soon as his sodium was back in spec. I explained that I am an only child and they live way out in the country. He pointed to my mom and said she looked fully capable of taking care of my dad. I almost lost it, I asked him to step out in the hall. I told him my mom has Alzheimers and severe scholiosis (prob not spelled right). I told him she is not allowed to drive and they live 90 miles from me. I told him I thought we had it worked out for him to be transferred to a neurologist at big Baptist. He told me they would never accept him, he had a little neuropathy and he would send him to rehab since mama was unable to take care of him. He tried to hug me, yuk. I walked to the nurses station and told them I did not want him back in the room. I told them he had an attitude and would not listen. The nurse told me she didn't know if I could "fire" a doctor. I told her there had to be plenty of doctors in the hospital. Find me a different one. The social worker apologized for the entire thing. She had been very helpful trying to get daddy transferred to Big Baptist. I called Baptist and tried to transfer him myself. They said they could not accept him without the hospitalist transferring him. Now I am just frustrated. I feel like my dad is having mini strokes. No one is listening to me except the nurses and the social worker. They are in agreement with me. He is still having catatonic phases. I tried to work some on Tuesday and my uncle stayed with daddy so I could. I left work at 9:00AM and headed to Searcy. I was walking down the hall and heard one of the doctors talking about my issue. He was very unkind. He wound up being the doctor we got since I no longer wanted the other. He walked in with a major attitude. He told me he was releasing daddy to rehab even thought his sodium was still low. I begged him to send daddy to Baptist and he refused. I told him about my issues with the previous hospitalist and he told me he had never had a complaint before. I debated packing daddy up and putting him in my car and taking him to Little Rock. I was afraid he would try to get out of my car when I was driving since he was so confused. On Tuesday they transferred daddy to White County rehab. I was pretty impressed with the facility. They had a bed for mama. It was not much more than a cot with a mattress but she was happy. I fixed her meds up for the week in her planner. I loaded up all of mama and daddy's dirty clothes and headed for home. I got a call at work Wednesday that the doctor at White County Rehab was not in agreement with the hospital's diagnosis and felt daddy had suffered a stroke. They wanted to know what hospital I wanted to move him to. I told them either Big Baptist or UAMS. I did not care as long as it was close and had a neurologist on staff. Now I am really angry. I am afraid daddy will have permanent brain damage because he was never treated for a stroke the entire time he was in the hospital. I had to do a lot of praying during this time. I called the social worker at White County hospital and told her I wanted to talk to the head of the hospital. She gave me the name and number of a contact person. I called and gave me my in depth story of how my dad was in their hospital from Thursday night through Tuesday and not one of their doctors felt he had a stroke but the rehab doctor felt he had in less than 12 hours. I did not hear back from White County hospital for two days. In the meantime, White County rehab has a doctor at UAMS who will accept daddy but no bed. Rehab started working with daddy as if he had a stroke. He had vigorous PT, OT and speech therapy daily. He was still unable to feed himself. He had been vomiting at least once daily, but this stopped. I am now getting pretty stressed. Mama has gotten into her medicines and redone them. I talked to her and told her I was happy to do her meds please let me. I was going back and forth between my house, working and rehab (45 miles away). I did everyone's laundry at night and was very grumpy. I pretty much have stopped crying at this point. I decided I would be thankful my mom and dad are still with me and make the best decisions possible. At this point family started giving "advice" which came out more like criticism. I tried not to let it bother me. On Thursday morning I got a call at 5:45AM that I needed to drive back to rehab and sign daddy['s release papers. Mama's signature was not sufficient because of the Alzheimers. I am thinking great I was just there last night but I didn't argue. I was actually happy he was being transferred and maybe we would get some answers. I signed daddy's papers, checked on him and headed to work. I got a call at 1:00PM that he was being transferred by ambulance and I would need to pick up my mom and her stuff. I left work and headed to get her. I was a little concerned that daddy was going to get really confused and he did. I took Friday off so I could spend it at the hospital. I am so glad I did. Mama had apparently given some very confusing information about how this whole ordeal started. The neurologist did another ct scan and did not see anything. He felt like daddy had had a stroke and had placed him on the stroke recovery ward. Daddy is very confused, he thinks he is still at White County. Mama has messed with the pills again. I can tell she is not taking them right because she is very confused too. I went home Friday night and tried to get a good nights rest. I got up Saturday morning and headed back to the hospital. The neurologist came in and said they were going to check for blockage in daddy's carotid artery since they couldn't do a MRI due to his pacemaker. This test came back with 50% blockage which he said indicated he had suffered a stroke. They released daddy in the early afternoon to go back to White County rehab. Daddy seems to be doing better. He is telling everyone mama has dementia and there is nothing wrong with him. This is not like daddy at all. Normally, he is very careful of mama's feelings. He acts like he is angry with her and she can't do anything right. In his defense, she was pretty confused. An ambulance takes daddy back to White County rehab. I pack mama and all her stuff up and head back to Searcy. We got daddy settled back in the same room he was in before. He ate a decent supper and was very quiet. I talked to mama about her meds again, grabbed the dirty clothes and headed home about 6:00PM. By now the head of White County hospital has called to apologize and ask if there is anything he could do to help. I told him the hospital told me my dad should make a full recovery. I told him I wanted his hospitalists to transfer patients to hospitals that have in-house neurologists rather than trying to diagnose brain injuries themselves. I was within two miles of the house when mama called to say daddy was going home. I asked her what she meant and she said he wasn't going to stay there. I asked her to put him on the phone. I asked him what was going on and he told me he couldn't do the rehab. I probably handled the whole thing wrong but I told him the doctor would not release him to go home unless I quit work and stayed with them 24/7. I asked him to wait until the next day and we would work it out. I thought we were okay and mama called back again and said he was going to call an ambulance to take him home. I called daddy's baby sister to see if she had any better luck with him and she did not. I called rehab and asked them if I needed to come back. They said they had it handled and I didn't need to return. I called mama back and told her to go to bed and ignore him. The staff said they would take care of the issue. Come to find out he told them he was going to call the police. They told him the police did not come out that far and he seemed okay after that. By Monday daddy has taken a major step back into confusion. Daddy's side of the family are telling me that I have moved him too much. I should have left him at Baptist rehab. I explained to them that White County rehab was the only facility that would allow mama to stay with him. They told me I needed to worry more about daddy than mama because she would never get any better. I cried and I think they felt bad. By Monday, the therapist told me she was very concerned because daddy had quit responding to commands. He once again was unable to feed himself. They checked him and he had a uti. This gave me some comfort that there was a reason for the regression. They put him on an antibiotic but found out two days later it was the wrong one for the type of uti he had. They changed his antibiotic and he seemed to be improving. I am really struggling with mama at this point about her meds. She is continuing to "fix" them and they are all messed up. I finally took her pills away from her and felt like a terrible person because it really hurt her feelings. I explained to her that I needed to take them to a pharmacist and make sure the right pills were in the right bottles. It was her security blanket to have her pills and her planner but it just was not working out. We were afraid she would od. Daddy started showing improvement so I was starting to feel up. I have completely taken over bill paying at this point. I am excited because I was told daddy could stay in rehab for 20 days at 100% coverage and 80 days at 80% coverage. One week into his stay I got the call that medicare would no longer cover him at all after another week and I needed to arrange a place for him. It was their recommendation that if he went home he would have 24/7 care. Based on their observation of my mom, they said she needed to too. I didn't understand why he couldn't stay where he was but oh well. I found a place by the house called Sherwood Nursing and Rehab it had a 5 star rating. I visited and was very impressed. I was a little apprehensive whether he met their criteria. He was approved and I thought yay! On moving day, daddy went by van to the new rehab and I picked up mama and her stuff. She could only stay during the day at the new rehab facility so I told her I wanted her to stay with us at night. She wanted to go to a motel because she was afraid my husband would resent her being there. I explained it was his idea. So the next phase began. Daddy got very confused again when he was moved. He told the director that I was picking him up to take him back to Baptist. He really seemed to like it there at first. He seemed to have really good days and really bad days. I watched some of the therapy and was very impressed. A man from our church was in the same rehab facility and daddy didn't like him at all. This is so unlike my dad. Daddy became very angry toward mama during this period. I started being afraid he might hurt her. He kept trying to grab her purse. I couldn't figure out what he was doing but apparently he wanted her keys. I guess he thought he was going to escape and drive home. He would say mean things toward mama that she had dementia and didn't know anything. I really struggled during this period but I was excited I found a place close to the house that I could drop mama off on my way to work. Go after work and eat supper then take mama home. Daddy's side of the family felt like mama was with him too much and he needed a break from her. I tried to let it go in one ear and out the other but who can say whether they are right or not. Mama has started physical therapy at this point for her scholiosis. One physical therapy days she would stay at the house with the hubs while I worked. He would take her to physical therapy then drop her off with daddy once she was done. Four days into his stay there, the therapist told me he was not showing any signs of improvement and would not be able to stay. She told me it was her experience that he would never get any better. This was a hard pill to swallow and I burst into tears. They told me he had to be out in 7 days because Medicare would stop paying. I met with the rehab director that afternoon and I probably wasn't very nice. He told me there was nothing he could do because daddy was not meeting medicare requirements. I told him I was not stupid. It all depended on what his staff put on the paperwork. If they stated he was not improving, I couldn't get him into any rehab facility. He said it was his recommendation that mama and daddy go to assisted living. I told him I didn't know if I could get it all together in 7 days. He told me daddy could stay two weeks extra at $350/day with no therapy. He would be considered a nursing home resident but still stay in his same room. I started scrambling trying to find a place for mama and daddy. Everything I found that had an opening was in little rock which is not convenient for every day care and to the tune of $7,000/month. I finally found a place in north little rock called Parkstone Place that is an independent living facility. It was much cheaper $2295/month. I could hire an aide during the day Mon-Fri. I could do meds and supper and then do weekends. I went by and visited and liked the apartment. It had a shower which is easier for mama to get in and out of. I went ahead and paid a deposit of one months rent. Mama called and she had told daddy how much it was going to cost and he was refusing to go. I had to tell a lie which I hated. I told him I worked it out through medicare that they would pay for a time. I feel very guilty for doing this. If he ever gets to where he wants to do finances again I will have to fess up. I prayed about all my alternatives. My husband and I talked about me quitting work and taking care of them full time. Unfortunately, we would have no income unless I wrote myself checks from mama and daddy's account which I can't do. We also would be without insurance. I have more health issues than my husband but our meds alone would eat us alive. During this period daddy started getting very restless. He was having a lot of trouble with incontinence. I wasn't sure how this was going to work at the new living facility. I started checking into aides and found Home Instead. They charge $17.50/hr with a minimum of 3 hours. I asked God what I should do and all of a sudden I felt such a peace. I remembered Robbie who had kept my granddaughter for a year and a half was not keeping children right now. I called her and offered her $10/hr for 5 hours 5 days a week. She seemed excited about the new adventure. I found out on day 3 that I had to have a note from mama and daddy's doctor's stating they could live independently. This was concerning to me because I'm not sure at this point if they can or can't. I gave it over to God and started the process of trying to get a doctor to sign for them. I finally got the doctor at rehab to sign for mama. Mama's primary care doctor in Jonesboro finally signed her form. I was a little concerned because he checked no for living independently but added that I had hired an aide. Anyway they got approved to move in. We paid the $350/day for 5 days while we got everything ready at the new apartment. My husband rented a uhaul. He, my son and son-in-law moved furniture all weekend. My very pregnant daughter and I worked on hanging pictures, stocking the fridge, etc. I was excited but scared at the same time. We are worried that daddy is a flight risk. I start checking on Amber alert tracking devices. We found door alarms for the front and back doors which the hubs installs. I called Life Alert and asked them if they had a locking gps wrist bracelet. The guy started laughing and said they were Life Alert. I was not amused and told him I realized what they were I just needed a locking wrist bracelet. I was very annoyed. I finally gave up and went to ATT and found a gps tracker and a separate wrist bracelet it would fit into. Every evening we ate supper with mama and daddy at rehab during this time. He was released to walk on his own but still chose to push himself in the wheelchair the majority of the time. I bought him tons of magazines and some westerns. He actually started reading one of the westerns. He was watching TV but still very angry toward mama. So on move in day, I worked all day. I took care of my dogs then headed to pick mama and daddy up. I got the list of meds from rehab. This was a scary daunting list. Rehab also sent me with syringes and insulin. Now I am in panic mode. I have given insulin to a diabetic schnauzer before but never a human. The dog wound up dying so now I am really worried. I drove to the pharmacy and they told me in the drive through how to give an insulin shot. I loaded mama and daddy and all their stuff up and off to the new apartment we went. I took them on a tour. Everything seemed to be going okay. Daddy kept talking in rehab about how much he wanted to make stir fry. He and I cooked stir fry in the kitchen for supper. I worked my way through the long list of meds and prayed I had them all set up in the medicine calendar correctly. I double and triple checked myself while mama tried to talk to me the whole time. I finally told her I had to concentrate and could not talk. I hope it did not hurt her feelings. Daddy asked me if I was taking mama with me and I told him no. This was their apartment. I spent the night in the recliner, very uncomfortable. The next morning Robbie met us for breakfast. We did meds, checked sugar, bp and weight. I went home around 9 and left Robbie with them until lunchtime. It was such a relief to have some help. Daddy started getting quieter each day and would sit with his head in his hands. He kept turning the tv off and would not read. I tried everything I could think of the entice him. I bought hunting magazines, books, bird food, bird feeder, more stir fry stuff, etc. I offered to take them to their church in McCrory but he didn't seem interested. I couldn't decide if he was depressed, angry or sick. I finally got him into the doctor. He felt he was depressed and referred him to a neurologist. I am still constantly worrying that maybe he is having mini strokes. One day he just acted like he couldn't pick his feet up and had no energy. His bp was really low so I loaded him and mama up and headed to the er. His bp was 89/46. The doctor said he was dehydrated. They gave him fluids and his bp went back up. He acted very aggravated that I took him to the er. He said nothing was wrong with him. He wants to go home. I am really feeling guilty. I am still contemplating quitting work. Robbie and I are having a time with his sugar. The doctor prescribed Januvia and we finally start seeing a difference. Daddy starts having a few good days and then some really bad days. I have quit getting my hopes up that he is going to be okay. I am just trying to be thankful for the good days. I took him to his cardiologist and he felt like the diuretics were causing his dehydration and low bp. He took him off all diuretics unless his weight went up suddenly. He also reduced one of his heart meds. We ate lunch at Ryans which he loves. His favorite waitress gave him a big hug and he seemed to have a good day. We started noticing a difference in that his bad days didn't seem quite so bad anymore. He would have days he was almost normal then several bad days. One day he was sitting in the lobby walked out the front door and urinated on a tree. I am thinking great he is going to be arrested for indecent exposure. During this period I started feeling really bad and running fever. I hated exposing anyone to the crud but didn't have much choice. I finally went to the doctor and had a sinus infection. I got meds and started feeling better. Last Sunday daddy wet all over himself at Krogers. We got him cleaned up and he did it again. He pooped in the bathroom floor and I wanted to cry. Now I am worried he is having mini strokes again. He had an awesome day the next day. He initiated conversation and acted like his old self. The next day was a very bad day and I realized he was getting sick. The man never complains but said he was feeling terrible. I took him seriously and took him to urgent care. He had a sinus infection so we got meds. I went back to work and he slept most of the day. During this period he took off out of the front door and went around back of the apartment and started pulling up the plastic in the flower bed. Mama finally got him back in the apartment. Right now I am okay. I am trying to take it a day at a time. I love this website. It has given me hope and knowledge. The only knowledge I had before was what I got out of books and on the internet. Its helps to talk to people who have been through the same thing. We have a long road ahead of us. I seriously doubt mama and daddy will ever get to move back home. They seem more settled in the apartment which gives me a sense of peace. I will add more as the story goes on.

Debbyavery0

My dad had a stroke 9/4/14. He has really good days where it is almost like nothing is wrong then the next day he won't talk and acts really confused. Is this normal during the recovery process? The ct scan did not show a stroke. They could not do a Mri due to his pacemaker. They determined a stroke based on blockage in his arteries on his neck.

Sign in to follow this  
×