Jhari

Nancy, my heart goes out to you. I hadn't been on here & then when I was I didn't see your posts anymore & wondered if you were OK. I'm so glad you're getting help for your depression. You've gone through a lot & been so strong. It sounds like you're on the road to recovery, but I know there are a lot of ups and downs. Don't give up!!

Nancy, yeah I am getting pretty tired of going the extra mile. it just seems that things that should be noticed and reported, aren't. What would happen if I wasn't there to catch things? The same thing that happens to the majority of people there, it just gets ignored until they eventually get so sick that something has to be done or they die, Today I changed mom's pull-up and it was disgusting. It was saturated with bloody urine and the smell was off the charts! Her socks were wet, too, and blood-tinged. So I got the nurse right away and she called the urologist. He wanted to know what mom's doc had treated her with a couple of weeks ago. The bad part is that we were waiting to hear from the urologist before she was treated! So I stayed until the order for Keflex came in. Mom's doc will be in on Thursday and I need to talk with him about all of this. The infections, the low blood count. It's just not easy, is it. Hope to catch you in chat in about 20 minutes. Thank you Yvonne and Fred for your concern and prayers.

I was so upset that I missed chat last week. By the time I remembered it was 8:45 and I was just too tired to log in. I am frustrated (as usual) with what's going on with mom. With the last UA C&S, there was still bacteria in the urine. Prodius, but now don't know what the plan is. In the last week, mom has seemed to be sleeping more and just seems weak. Bloodwork was done last Tuesday and her hemoglobin was 10.7. The doc ordered 3 occult blood stool specimens. Usually mom has a bowel movement every day, but of course last week she had only 2. Today she had another and they were all negative. The bloodwork she had done this morning showed that her hemoglobin was down to 10.1. This concerns me because when mom had the tumor in her colon, her hemoglobin was low. Because they couldn't find the cause for a few months, she had to have a transfusion every 2 weeks. If her hemoglobin got to 10, she had a transfusion. The nurse called tonight and the doc says they don't do transfusions until the level is down to 7.5, which seems pretty low to me. So I am really upset and frustrated. Mom is so pale and her normally red lips are light pink. But there is nothing I can do.

Sue, I feel sad for you. I'm glad though that you're just letting it out. Sometimes we just have to let it hurt. I do not show a sad face in public either. In private though, sometimes I really "wail". Sending you a hug.

Cindy, I am so sorry to hear of your mom's passing. My prayers go out for you and your family.

Aphasia is a horrible thing, not only for the victim, but for the ones who care for them. I just don't understand how everything gets so mixed up in the brain. Mom says some really off the wall things. On good days, she can say quite a few whole sentences that make sense. Today was an ok day, but I just wanted to share some of the things she says. I got my hair-cut last night and usually she notices something different. She hadn't said anything about it, so I asked her, "Do you see anything different about me?". She looked and smiled, "Oh, your lipstick." I said, "Look, I got my hair cut!" To which she replied, "I know, that's what I said." Later on, as we were eating lunch, she pointed to her cup of tea and said, "Go ask the older children to put more onions in this." I asked, "Do you want more hot water in your tea?" and she said, "yes, please, just a little". I am so happy on a day like this when I can figure out what she's saying and I usually can. It makes me sad when people act like she's crazy when she says things like this. But because most of the staff have heard me communicating with her like this, they have learned to do the same. Today she finished her antibiotic and tonight her iv will be finished also. I have asked that they bring her lunch to her room from now on. She eats in the big dining room for breakfast and the little dining room for supper. It was ok in the dining room for lunch, but because I like to visit with other residents and staff, it was a little hard for mom. Alot of noise really makes her anxious, auditory overload, and she couldn't hear me, and I couldn't make out what she was saying. In her room, it's just her and I, she is relaxed and we have great conversations. Today was a good day and yet when I layed her down for a rest, she said, "I'll do this now, but I want to go home, do you hear me?" It breaks my heart when that happens, but after she has slept for even a little while, she's all over it. I think when she gets tired, it's just hard to think. Makes sense, because I can't even think straight when I'm tired. So all in all, pretty good day. I was so glad for chat last night. It's just nice to be in touch with others that understand. I told one of the residents at the home about this site. She is young (60's) and had a stroke before Thanksgiving. She is going home on Friday and has alot of questions. So I told her about us, hopefully she'll hook up. Hope everyone is staying warm, I'm not. So ready for Spring.

The last time I posted, which has been almost 2 months, mom still had bacteria in her ur ine. but they were not treating it. We had an appt. with a urologist on Jan. 8th. Before we went there, she had an ultrasound of her bladder done . A week later, when we actually visited the dr., she had a ct scan and he also st. cath'd her for a UA C&S. I was there when he did it and the urine was dark and cloudy and the last bit was thick and white. He said that just may be because she doesn't drink enough .The home didn't hear anything back from him and I dropped the ball, I should have been on top of this. So this morning, I got a call from the RN at the home. The urologist had called, and mom has an infection. She had 2 different kinds of bacteria and he was going to treat her with penicillin, but she is allergic. So he had the nurse get another specimen and they won't have results until Monday. I am so upset. Why would it take 3 weeks to get this information? Yesterday when I visited mom, she was at the table at noon, sleeping in her w/c. I woke her up and she said she wasn't hungry. I told the nurse and the aides to not take her to the dining room when she's like that, if she's tired, just let her sleep. I layed her down in her bed, and she fell asleep right away. She slept the whole 2 hrs. I was there. Today I took food in, hoping that would whet her appetite. She was in bed and sleeping. I woke her and she said she would eat. So I put the soup and sandwich in front of her. She took 2 or 3 bites and then she fell asleep. Again she slept most of the time. She did get up once and used the bathroom and went right back to bed. So she has been sleeping alot. When I got home, I called the urologist, but they had left the office at 12 and won't be in until Monday morning. I just feel so frustrated. Does anyone else think this is strange, that it would take 3 weeks to call. So I'm just trying to calm myself down, there's nothing I can do about it until Monday now.

Once again, it's been almost 2 months since I've posted anything. Not much has changed, still up and down. Mom had a UTI since July. She had several courses of Macrobid and everytime they rechecked it was still there. So last time (about 3 weeks ago) they tried Gentamycin IV . When they rechecked it showed she had a colonization of another bacteria - Prodius, I think. They are only treating her with cranberry capsules, we'll see. I guess since I have posted last mom was in the hospital. My sister-in-law came to visit on a Friday, stayed 4 hrs., brought cds of my brother in hospice and funeral. She said she didn't show them to her, I don't know for sure. Saturday I came in and she was there again. She told mom my brother had died, mom was crying and saying, "Oh no", quite upset. I finally had to ask her to leave. She did, but not before arguing with me ( in front of mom) that mom deserved to know the truth. I think I have told you that whenever mom asked about Dale, i told her he was very sick and went to heaven. Sunday night the home called and said they were sending mom to the hospital in an ambulance, it was midnight. So Earl and I got up and went right to the hospital. Mom had gone into a-fib and it took until 4 am to get her stabilized. She was there 2 days. They also found she still had the uti and may have had a slight heart attack. It was a very upsetting couple of days. When she came back from the hospital, she was on Amiodarone. Since then she has been quite lethargic and wants to sleep most of the time. She had an appt. with the cardiologist, but it was cancelled. It is so hard to get in touch with the drs. and then to have them listen to you. I think maybe she needs to have her antidepressant increased or start a different one. It's just very frustrating, which you all know. I hope everyone is doing well. I'm sure very busy going into Christmas.

Yesterday mom's sister and her daughter came to visit. They have not seen each other in over a year. I was a little concerned over how it would go. Mom was taking a nap when I got there and I let her sleep until the company got there. When they did come, I got mom up and we went out to the little dining room. I think mom did ok, but she had trouble getting the right words out (of course) and they are not used to it. Same response as most people - "oh my, she's so confused". But all in all, it was a good visit, they only stayed about 40 minutes. When we all left, mom was in a good mood. Today I tried something different. I waited until after lunch and went to the home. Mom was lying down, ready for a nap. So I told her I would be back later, she was ok with that. I was gone about 2 hrs. I went to WalMart and on the way back, I got 2 cups of coffee and 2 donuts. When I got back, mom was up and sitting by the nurses station. We sat and had our coffee and donuts. Things seemed ok. I took mom to her room. She started getting angry, was trying to tell me something and I didn't understand. I told her I had to leave and she said, "why?" I told her my husband would be home and I was going to fix dinner. She acted really disgusted. Finally she said, "Just go then". I told her I loved her and left. I don't understand what she wants. I think maybe she thinks I'm going to take her home. Sometimes she seems to comprehend and understand things and then it switches back so fast. Sometimes within the same conversation. So when I got home my stomach felt like it was in a ball. I just hate leaving her like that, but I know from experience nothing helps. I can't make her happy. Tomorrow I guess I'll go in the morning, I'm trying to switch things up a little, depending on what I have to do that day. I just wish I could understand her more. On the bright side, we have had wonderful fall weather this week. Bright sunny days, and cool nights. Yesterday was our 9th anniversary and although we did nothing special, maybe we will do something Monday, since there is no work that day - Columbus Day. Hope everyone is doing well.

Thanks for the encouragement. I don't know how you did it, Sue, with both your mom and husband. I guess you just keep going - and praying. Mom was a little better yesterday, but then she got real angry again. She said, "I want you to go home". I said, "Do you want me to leave now"? and then she said, "No, no, no". I think maybe she wanted me to take her home. She also told me I hurt her and I don't know what I did. I think sometimes she gets really frustrated when I take her out among other people and talk to them. I involve her too and that may make her even more angry. I don't know. Mom's sister is planning on visiting her today. She lives 50 miles away and has Parkinson's. They haven't seen each other in over a year. Her daughter is bringing her. I don't know how that will go, it depends on what mood mom is in. I plan on being there, but sometimes I wonder if it's better if I'm not there. I just don't know anymore. I will keep on doing what I'm doing, regardless of my feelings. It is my job and I feel it is my responsibility to make sure mom is getting good care and being treated well. I watched a video on Strokenet yesterday on a support group for people with aphasia. It made me cry. I just wish mom would try, but at 85 I guess she feels what's the use.

It's been months since I've posted anything, funny how time gets away from us. It was a very busy summer, had the grandkids alot of the time, which is a good thing. In August, mom was pretty sick for a few days. It took the nurses 2 days to get a reply from the dr. She had a uti. I have switched doctors since then, by the way. After each series of the antibiotic, she still had the bacteria. She went through 3 different series of it. I finally requested that she be put on something prophalactically. So she now is on Macrobid once a day. A couple of weeks ago, we had 2 wonderful weeks. She went to activities, stayed dry, I could understand most of what she said. Then all of a sudden, it all changed. Within one visit, actually. She was in a good mood when I got there that day and then her mood changed. The last half hour I was there, she cried and I couldn't understand what she was saying. I had to leave her while she was crying. That really broke my heart. Lately I just feel like what is the use. She is mad at me alot. She tries to tell me things and when I tell her I don't understand and try to help her to get it out, she just gets mad and says , "Yes, you do". There was a big problem at the facility. There was a particular aide that was not very nice, I would say borderline abusive to the residents. Mom did not like her and mom likes all of the others. There were a couple other family members that saw this. I first went to the don and she really didn't do anything. Then I went to the administrator and he said there had been quite a few complaints. The aide was fired this past weekend. Hopefully this will made a difference. I just feel so discouraged. Mom won't try to walk anymore and just wants to sit in her room. I try to take her out to the entrance where some of the residents and families gather and talk. She'll only sit there for a short time and then she wants to go. I don't take her for rides anymore, because every time I do she doesn't want to get out of the van. We did get to sit on the porch and feed the ducks a few times. I still go every day and when I leave, I feel completely drained. I've almost given up trying to make progress with her, because she is done and she wants to die. I can't really say that I blame her. I will always go to see her, just feels hopeless some days.

Nancy, I wish they would do the same thing for mom. She has had quite a few uti's since being in the home. I can always tell, but getting them to listen and then waiting for the dr. to return calls for an order - frustrating. She has just finished another course of Macrobid. She had an iv for the first couple of days, can see the difference so fast when that gets flowing. I've had a very frustrating month with the facility, I'll blog about it later.

Since my last post, I have gotten alot accomplished. I picked up the money from the lawyer on the 14th and deposited it the next day. After talking with the caseworker, I learned I had 10 days to spend the money down. So I got the cemetery plot mystery figured out and made an appt. with the guy that sells headstones. My husband and I went to look at them last Monday night and picked one out and payed for it. The next day I went shopping and bought mom lots of new clothes, pillows, jewelry, comforters, whatever I could think of she would need or want. I payed off her nursing home bill and the remainder of money I added to the burial fund. Spend down completed. Last Thursday I faxed all of the receipts to the caseworker. Whew!!! So glad at least that part of it is done. Last week was a bad week with mom. She was in a bad mood. One day the kids and I went and took her to the tastee-freez, She was ok until we got back, she did not want to get out of the van. She cried and called me a liar, told me she hated me. When we left she wouldn't even look at me. She said, "Shame on you". ON days like those, I am totally exhausted and heartbroken. Therapy has picked her up again, due to the fact that she spills drinks frequently at meals. Her depth perception has really been affected. Yesterday when the girls and I got there, they were trying to get her to go to therapy, which was not easy. So the girls got her to go and were bouncing a ball back and forth with her. But then she started crying and asking me to get her out. So we went to her room. She started being mean to me again . I told her I realized that she was mad and I didn't blame her, but it wasn't my fault and if she kept treating me like that, I was going to leave. Her attitude changed right away. We all went on the porch and the rest of the visit was ok. Today we went again, not knowing what to expect, but her mood was good. We sat on the porch. Shelby and I went to the tastee freeze to get milkshakes for all of us and Anna stayed on the porch with gramma Jane. I know mom gets so frustrated because people do not listen to her. Today she was saying so many whole sentences that actually made sense. I don't blame her for being angry, but when she gets like that with me, especially when I'm tired, which I guess it most of the time, I can't handle it. I just wanna cry. So, as usual. it's up and down, which is the norm. I told one of the nurses today, that you'd think by now I would realize it's up and down, but I keep hoping that someday it will be back to the way it was. I am missing my brother so much, I still get home and think, I need to call my brother and then realize that's not an option anymore. I'm just taking it one day at a time, so very much to be thankful for, and trusting that God will heal my aching heart.

Mary Jo, I just read this. I am so sorry, My heart goes out to you. Hoping that time and the peace that only God grants will see you through these hard times.

I had a little mini conference with the don and the rnac today. The don is going to monitor closely what is going on with mom's toileting in the next few days. Nancy, I had thought about that too. The staff is used to me being there at a certain time and that's probably what's going on. I brought that up and the don said to let the aides come and toilet her while I am there. Another issue was that every day just about at lunch, mom knocks over 1 of her drinks. She gets milk, juice and coffee. She does this little "shuffling" thing with her drinks (which drives me nuts) and because she does not see well, she frequently bumps into her glass and the drink spills. They have tried putting lids on the cups, but she takes them off. Today, I noticed the lady next to her had her drinks in cups with handles on both sides and a real sturdy hard rubber cover. So I mentioned that in the meeting and they have put in for an eval. of that. I felt pretty good about the meeting, hope it brings some results. It was a nice sunny day today, so we sat on the front patio for awhile and then we went the tastee-freez near by. Mom had a flurry. She got right out of the van when I took her back, but in her room she started saying she didn't want to stay. That breaks my heart, usually happens when she is real tired. I layed her down for a nap and she was ok then. It is nice to have the grandkids, they are 9 and 11, so they can do most things by themselves. They are a big help. Thanks Fred for your continued prayers. I really appreciate it.

Thanks Debbie. Yes, I was very proud of her and happy that she tried. It also helped that everyone we passed or saw us coming up the hall said, "Good job, Jane". Truthfully I don't even know if mom takes antispasm meds. I need to talk with the DON about that. I know I have to keep after them, because things go along ok for a week or so affter I have talked with someone and then it slips right back. The home does supply depends, so that does help. I use my own wipes and yes, I do all of mom's laundry. I have seen the way other residents clothes come out of the wash. Not good. I always turn her pants inside out before I wash, them soak them for an hour or so in vinegar and detergent, then prewash and finally wash with 2 rinse cycles. It works pretty well. I am so glad I am able to go every day. So many things go unnoticed/undone. I feel so bad for those who never have a visitor and just have to make do. Thanks again, Debbie.

I forgot to say (and this is very important) that mom walked for me today. It's the 1st time she has in about 2 months. It wasn't very far, but at least she did it. She did really well, she's still quite strong. Praying for more success tomorrow.

The week has been a pretty good one. Since school is out now, I have the grandkids more often, which is a good thing. I have been taking them to the home with me when I go and that really seems to cheer mom up. Tuesday was mom's 85th birthday. There is a little room there for people to have privacy for family get togethers. I went over and decorated, party balloon, tablecloth, the works. Amanda and the girls came. We had little sandwiches, chips and dip and deviled eggs. I made a cake, too. Mom had a great time. I'll try to post the picture here. The weather hasn't been the greatest here lately, so we haven't been on the porch much. Yesterday though was nice, so we all sat out there for quite awhile. One problem we've been having is that mom is going through pants like crazy. Usually I get there before lunch and take her then. Alot of times she starts peeing right when I pull her pants down. Floor gets wet, pants, shoes, socks. The last couple of days, I have been there later, after lunch, so I take her right in then and the same thing happens. Today when I went in, she had already had her pants changed once, I put her on after lunch and she did the same thing. So that makes three pair of pants in one day. She is supposed to be on a toileting schedule, but I am beginning to question that. It sure makes for alot of laundry. I have to go to the lawyer tomorrow and pick up the check for mom's house. I ran into a problem when I couldn't find the deed to the cemetery plot. I talked with someone who keeps records for the cemetery and at first they didn't even see my dad's name. Today I talked with another person, though, who says my dad has a double lot, so hopefully that is taken care of. Then going through papers (mom was not very organized) the last piece of paperwork I found for her life insurance had my brother as the beneficiary. I really don't know what to do about that. Talk with the lawyer, I guess. We also have to go look at headstones, I have no idea what they cost. So at least some things are getting done. I am still feeling pretty exhausted. Alot of people tell me I look tired, but I realized I really must look pretty bad, when my youngest grand-daughter told me yesterday that my eyes looked really droopy! I am missing the chats on Tuesday, but I am having trouble getting into them. I hope you are all having a good week.

Thanks for your encouragement, Debbie. I am allowed to "gift" $500.00 a .month, which I have been doing all along. That will come in handy, I do use it for special things for mom. I decorate her room every season, and have been including her room-mate in that, plus treats we get from the tastee freeze, magazines, etc. It comes in handy. It is so exciting to hear her use more sentence and phrases, There are still people that think she has dementia, don't take time to listen, and that is so frustrating. But at least most of the nurses understand and we do. The girls (grandkids) do so well with her. They read to her, color with her, and they are very good at figuring out what she says. This week her and Shelby (she's the stinker) were making faces at each other and mom said, "You think you're prettier than me. You stink!" We all laughed and then mom said, "I'm just kidding". I am dealing with the grieving better, I guess. I am still allowing myself to just feel the pain and cry if I need to. I know it's a process and it takes time. I'm also so glad to get a response from one of you. I know that all of you understand what I'm going through, though it may not be exactly the same. Thanks again. Joni

Yesterday I signed the papers on Mom's house. I will get the check on Monday. I am planning on buying a double gravestone for mom and dad. Today is the 43rd anniversary of my dad's death. I am allowed to have $8,000.00 in assets for mom. She has a life insurance policy that counts as $4,900.00. So I have to spend down to $3,000.00. I'll probably put more into her burial fund, have 7,100.00 in that now. Plus she needs new clothes, alot of new stuff. The Public Assistance people have been very helpful and very nice in helping me figure out how to spend down the money. Yesterday was a good day for mom. Actually the whole week has been pretty good. Monday and Tuesday the grandkids went with me and that made her very happy. Yesterday was so nice outside. We sat out on both porches. She likes to watch people coming and going. The front porch looks out on the lake and there are ducks and geese to watch.Yesterday she said while patting her mouth, " I wish I could..." I said, "You wish you could talk?" Then touching her head she said, " It's all crazy language in there. Blah, blah, blah, I sound like a baby." I said, "I know mom, but you're doing so much better, and I can understand almost everything you say." She said, "I know, I guess I just have to live with it." I thought that was pretty good. There are about 3 more recent admissions with aphasia. One is a young man, 54 yrs. old. 2 are ladies about mom's age, and they have been placed at mom's table in the dining room, for therapy purposes. I am so happy about that. Has anyone seen the video, (which came from Stroke Network) called Heart to Heart by Marc Blac. It's on You-Tube. It is so good. I showed it to my daughter and grand-daughters and they cried. It shows how aphasia victims are trapped inside their mind. It shows the words in their heads and the jibberish that actually comes out. I told the speech therapist and the administrator about it. Hopefully they will watch it and find it helpful in dealing with all of the aphasia patients. At least most of the nursing staff seems to be "getting it".

Thursday was the 2-wk. anniversary of my brother's death. Friday would have been his 62nd birthday. I am finding that even though 5 yrs. seems like a long time, it was not nearly enough time to say good-bye. I feel an ache and a rawness inside that will not go away. We were at my mom's house tonight, clearing things out. The closing date is on Wednesday. It was sad and when we got home I wanted so much to call my brother. We talked almost every day. I miss him so much. Right now I feel overcome with grief, nothing helps.

I have not been to see my brother since I posted a week ago. I had planned on going at least once last week, but I am just too exhausted (in every way) to make the 2 1/2 hr trip up. So I have been keeping in touch with phone calls and texts. He is growing weaker every day, but is still aware when he is awake. Mom has been doing ok. On Saturday, the nursing home had a Mother's Day Social. I had asked them to lay mom down right after lunch, since the social was at 2, the time she usually naps. So when I got there, she was still in bed. She said she did not want to go, but I used a "guilt trip" on her. Told her I had brought clothes for her and I really wanted her to go with me. So she said ok. I got her dressed in really nice clothes and she even put lipstick on and a pretty necklace. We sat with her roomie and her family. We had crackers, pepperoni and garlic dip and iced tea or punch. Then cake. Each resident was given a little bouquet of flowers and they had a short program of 2 ladies, one speaking and one singing. It was very nice. I'll try to post a picture on here if I can. She was exhausted, so I layed her down after that. Sunday, after church, we were invited to my daughter's house for lunch - tacos, cake and ice cream. My daughter and her family went to see mom after that. She called and was upset, mom had acted like she didn't want them there and cried most of the time. Amanda said mom actually hollered at her and told them to leave. The grandkids were with them, too. My husband and I went later, and the nurse said that mom had had a bad day. She cried alot and told them that she just found out her father had died. This is so strange and I'm wondering what is going on in her brain. Maybe she was thinking about my brother or had a bad dream. I also know that one of the residents there died yesterday and I'm wondering if the if staff was talking about it. Sometimes mom hears bit and pieces of things and then I think they get scrambled in her mind. Anyway, when i went into her room, she was sitting alone and when she saw me she started crying. She kept saying,"I couldn't go, I just couldn't go" and then she said (in stroke talk) that she had hollered and been mean and she was so, so sorry. I tried to comfort her, I guess she thought they were going to make her go somewhere. She said, (and this was very clear)"I don't know who I think I am". She wanted me to tell them she was sorry and hoped that they would come back again. She settled down and I got her washed up and in bed. As soon as we got home, I called my daughter and told her. When I was at the home today my daughter called and talked with mom and told her, of course she would come back. It's just so hard trying to piece things together and figure out why she is really up set. I need to tell Sue that at church yesterday, we had missionaries from Australia. They were from Queensland. It was very interesting. Australia has always been on my list of "places I would like to visit". Hard to believe that it's almost the middle of May and yesterday and today we had snow. It didn't stick, but it is so cold. WE are all so ready for warm weather.