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caregiver blog

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It has been over a month.

This transition to widowhood has been easier than expected.    That is because the good bye was a long one.  3 months before William died, my son, had come down to visit.  He told me that William was declining and suggested that I look into hospice.  I wasn't ready for that.  But it got me into really thinking about life without William.   So my good bye was a long one.   Then the month that I put him into hospice was the real  start of the end.  Everyday was like the last time that I might see William alive.   Especially when I had to put that hospital bed in the living room.  Then the last week was really hard.   That was when I afraid to leave the house because I felt that every breath was going to be the last one.  The good bye was soooo long.   I am so happy that William is out of this life.  He so wanted to get out of that hospital bed.  But, I was not able to get him out by myself.  I felt so bad.  I had been able to take care of him by myself when he was able to give me some help.  But at the end he could not help me anymore.  I am taking classes at the community college,  taking bible studies and getting involved with the church.  I did start going to a different church because the one that I went to with William would hold too many memories.  I walk the dogs on long walks. I still go to the gym every morning.  I like to swim and started doing the machines this year.  The gym does not hold a lot of memories with William because he did not come but a few times.  It is freeing to be able to be out and about.  I no longer have to rush home and check on William. I don't have to stop and by him something special to eat.  I don't have to save part of my lunch for him to share.  I will be going on vacation with my son to Mexico.  in early November.  I will visit him at Thanksgiving and Christmas.   This will be the first time in 10 years that I have left the house and flown.  I am planning on going on a mission trip with the church to Mexico. in January.  I will go on the women's retreat also. I may possibly go on another mission trip to Kenya. It is so amazing that I can actually leave the house and do stuff.  Life is going on and sometimes I get a little sad.  But nothing like the 3 months before William died.   I will decide on when to move out to California with my son.  I am going to wait for a year then get my things together to move.  The last week that William was living was when I packaged up most of his things.  Now, I just have get myself together and get my clutter under control and start the process of moving.   I have gotten a lot of the paperwork done.  This has coincided with my pension starting.  But, fortunately all of this paperwork has been mine to deal with for years.  But, I hate paperwork and procrastinate.     It is amazing!   I am able to sleep at night.  THat last month was so hard.  I could not sleep at night.  William was always up and so was I.   I sometimes wake up at 1AM and then am able to fall back to sleep.  I am at peace.   When William was here, I had to very vigilant 24 hours of the day.  I did not sleep a lot.  I awoke at the least little movement or noise.  I just thank God that I am able to get a good night's sleep.     

ruthwilliam

ruthwilliam

 

It is Done.

William passed yesterday 9-18-18 at 1:06PM.  William had been in hospice for 1 month.   This has been the longest month of my life.  I am so relieved that the vigil is finally over.  Here it is 2:40AM and I am up.  I am so used to getting up and checking on William. I want to thank all of you for being there for me. I want to share that the stroke board has been a lifesaver for me since William's stroke 10 years ago. I would suggest that anyone who needs hospice utilize it.  I thought that I was getting hospice in place early and I used it only for a month.  They provide a wonderful service.  They enabled me to keep William at home and let him die peacefully at home.  When I needed more help they gave me more help.  I started with help 3 times a week and ended up with help twice a day , every day. This month has been a vigil that I am glad is over.  When William stopped eating and drinking, it became a matter of time. I have wonderful friends who live around me and were able to support me through this time.  I was able to call upon them to be with me when I was afraid to be by myself.  I do encourage you to reach out for help when you need to.  Do not make yourself travel the journey by yourself. I know that many caregivers have traveled this long road with me.  What amazes me is the accolades that I get from everybody about the way that I cared for William.  I am called a Saint, an amazing person.....but I know so many from here that have done the same. So many of us have devoted our lives to our loved ones.   William's death brought closure to his estranged children.  They were able to see him in his last days.  Miracle of miracles who was coherent and able to speak with them.  He was able to see his ex-wife.  Life is amazing. Now onto the next chapter in my life.  What is going to happen? I went out to dinner with 3 of my friends last night.  It was so good to get out of the house.  Friends are wonderful.  I will be having lunch with another bunch of friends today.  My old YMCA bunch.  I have my trips to California to look forward to in November.  The quilt festival in November. I just got off the phone with William's cousin.  It was nice to reminisce.  I just want to thank everyone for their support.  This board has been a Godsend to me.  Thank you.    

ruthwilliam

ruthwilliam

 

A bed sore

It has been three weeks.   I cannot believe it!   A bed sore!   William has never had a bed sore.  But this just lying on the bed for 3 weeks has done it.  I have been changing the underpad often.  It is difficult to change by myself.  I have called hospice and informed them that I will need help twice a day to change and clean him.  They have agreed to do that.  It is 3:28AM .   I have been up since 2AM.  I got the kitchen all cleaned and cleaned the floor of the living room.  William is usually up this time of morning.  Thankfully he is sleeping peacefully.  When I changed the underpad.   He  asked for a sip of water.  He had a couple of swallows. I am just praying that he will go peacefully before his skin deteriorates more.  The CNA comes and bathes him and I have to be the one that is looking for that.  It started out as a skin discoloration.  I have put a pillow under his bottom to shift his weight. This morning his eldest son will be coming out to say good bye.  They have been estranged for over 25 years.  I do not know how responsive William will be.  But, this will be closure for his son.   I hope that perhaps this is what William has been hanging on for.   The chaplain was concerned that perhaps  I am not ready.  But,  I do feel that this will be a relief.  I hate to see him just lying there.  Yesterday and the day before.  He kept asking to be let out of this bed.  I tried to explain that I could not safely transfer him.  I did feel so bad.  In the past  I would move him from the bed. It is strange the nurse wanted to check his heels for bed sores on her last visit.  But, she did not check his bottom.  I remember my son telling me to always check his backside for bedsores.  He said that nobody really looks there. William is sleeping so peacefully. I am so used to waking up and checking on William.  I wonder if perhaps I will be able to sleep through the entire night without waking up to check on William.  Well, we shall see. I did buy tickets to go to California over the Thanksgiving holiday.  I will spend the holiday with my son.  It is so strange to make plans again.  I am so used to staying at home and taking care of William and the dogs.  My friends will take care of my dogs for me.  It will be strange to be on a plane again.  Imagine it has been 10 years since I last traveled. I wonder if my minimalist idea will really hold.  I plan to shedding a lot of stuff for my move.  But that will be in year or so.  It is so strange to think of life in the future. Two days ago the hospice nurse thought that William would last thru the night.  But,  he is still here with me.  Everyday,,,I wonder.  He has lost so much weight and looks gaunt.  This is a fellow that has always had trouble with his weight. A friend of mine told me that I should cross fold a sheet and lay it under him.  This would help me to turn him.  I will do that when I have the nurse come in today. This morning he has been compliant and let me turn him by myself.  Maybe he is getting too tired to fight me.  I have scheduled a nurse to come out tomorrow and a CNA.  I will call them again on Monday to make sure that they have the same thing set up for the week.  Who knows.   I may still need all of that help.  

ruthwilliam

ruthwilliam

 

The end is near.

This is a difficult time.  I thought that I was getting hospice involved early.  But, William declined rapidly.  My best guess is that William may pass today or very soon.  I was so afraid that I would get up and find William gone.  I kept getting up every hour.   I am not doing my ritual gym thing this morning.  I want to be close by.  He is calm and peaceful.  He is not agitated like he has been. I actually did go to the gym..  Just later. This will be a long and difficult vigil.  William is now resting peacefully.   He complained that his foot hurt him.  I offered him some pain medication which he refused. I am blessed with wonderful friends.  I have had calls this morning from friends that have offered to sit with William and give me a break.   I will take them up on that.  I need to get to the gym and work off some of this nervous energy.  But, I have the hospice nurse coming out.  I do not know when she will come.  I sent her a text.   I need her help in changing the wet underpad.  Hospice has been really wonderful.   I am able to keep William at home with their help.  He has been in and out of sleep all last night.  I will now have William in Diapers.  This will hopefully make it easier on me to keep William clean. The bed control is not working.  I will have to call hospice and have them send somebody out to fix the control.  William ate 3 teaspoonfuls of applesauce this morning.   He did not know what it was.   I was able to take the dogs out for their little morning walk.   I will be waiting around for the hospice med drop off.  Last time they said it was from 8:30 AM to 10AM.   I will make it to the gym after 10AM.  then I have a friend coming out at 3PM.  I am spending more time sitting next to William.   I am not going upstairs and sewing.  I just don't have the concentration to do that. Well, William rallied and was more alert and did not have that funny breathing the next day.  This waiting is not a fun process, but just part of life. I really hate deaths at this time of year.  Thanksgiving and Christmas follow..   I am trying to think of what I plan on doing.  It has been just the two of us for long.  I may travel to my son's, tickets are not very expensive now.  But, I have 3 dogs.  Friends will take care of them.  But, I still hate to leave them.   I still need to ponder that idea. I started this blog two days ago.  Wm rallied and is still hanging in here.  It is 2AM Sat. 9-8-18.  He is up and responsive.  Calm and peaceful.  Hospice sent somebody and they fixed the bed.  It was actually my fault.  The plug is connected to a wall switch.  I had the switch in the off position.  The guy said that the outlet was not working.  But, I didn't tell him.  It actually is working, I just had it in the wrong position.  My friend gave William such a wonderful gift.  She came out to sing for him.  What a marvelous voice she has.  She sang hymns to him.  It was beautiful.  The gift of music is wonderful that she shared it with us. Today the CNA will come out to help me bathe William.   I will head to the gym early and be home to await the day.  It is so nice to have hospice to call when I need help.  I have been told again and again that is amazing what a job I have done with William for so many years.   I know that other caretakers have done the same.  But,  from the comments,  it is not the norm.  They have all said that William is so blessed to have been taken care of so well all of these years.  I have been privileged to have been able to do what I have done.  Let me post this now.   

ruthwilliam

ruthwilliam

 

Our next step - Hospice

Well, I finally made the decision to talk to hospice.  William has been declining.  He sleeps alot and eats very little.  He has alot of confusion and sees people that are not there.    The hospice agency was great.  They have suggested that I get a hospital bed and set it up in the living room.  I will be getting rid of the couch and recliner.   They provide all of his meds, bed liners, vinyl gloves, wipes, lots of things.   I will get a nurse once a week and CNA 3 times a week to bathe William.  A chaplain will visit him weekly, and they have volunteers that will come and sit with him if I have to go out.  They have respite care for the caregiver  (5 days each month).  I fortunately got all of our paperwork in order.  Medical power of attorney and medical directive for physicians.   Today, William has been up and cognizant most of the day.  He even ate a banana, applesauce and a little sausage patty.  Not much appetite but since he hasn't eaten for 2 days this is good. We shall see how things work out.  It has been ten years since his stroke and his decline has been slow but keeps progressing. Who knows what the next steps will be?  Quality of life needs to be an issue.  William has been housebound for over a year.  Hospice could be used for a long time.  They just renew after 6 months.  This could happen with stroke patients.  Ruth

ruthwilliam

ruthwilliam

 

2018. A new year

This year makes the 10 the year since William's stroke.  He is declining.  I mean he sleeps more and gets more confused often.  Cognitive abilities are declining.  I have not been bringing him to the pool.  He just does not want to go.  I no longer bring him out to eat.  He just gets too confused.  He constantly tells me that he just does not understand.  He is getting more incontinent.  So, I do more laundry.  He usually lets me put him in the shower.  But that is a chore.  He hates it.  He usually will take his meds.  But some days he refuses.  I feed him healthy stuff.  But, he does not have that much of an appetite.  He does enjoy the dogs. some days he will be alert and up.  But other days he just sleeps and then wants to be up all night. Life goes on.  He seems content.    

ruthwilliam

ruthwilliam

 

Sara Stedy

I saw the Sara Stedy device used at the pool the other day.  The caregiver told me that it really saved her back.  It looks interesting.  It costs about $1400.00.  I have not done any research on it yet.  But, I just wanted to put it out there as an idea for others.  Let me know if you have used it.  I will do some more research and post more later.

ruthwilliam

ruthwilliam

 

Hurrican Harvey

William and I are a few of the fortunate ones.  We are high and dry.  Our little area was spared.  I am so glad.  I do not know how I would have handled having to evacuate with William.  I am very thankful.  We have been watching the news round the clock and it has been scary.  Today for the first time, I drove out to the grocery store.  The store was out of bread and eggs. Some of the produce was not available.  But, all in all it was a nice little outing.  I have been spending my time walking the dogs and quilting.  My YMCA was flooded and the parks that I walk to are flooded.  So, I just walk around the neighborhood.  We have had cooler weather.  Not the high 90's.  It actually is in the 70's at night and early morning.  This does not feel like summer. one morning,. I gathered up all of the extra blankets and towels and some clothes.  But, I had nowhere to bring it.  A lot of the roads are not passable.  Besides the fact that I have to be available to take care of William.  I may just have to bring it to goodwill later.  Most of the shelters near me have all gotten all of the donations that they need and are not accepting any more.  People are so generous.  Lots of airlifts.  The road near us was a river and boats were constantly going on it.  Surreal. we never lost power or had water damage.  We are on the hospital grid.  We live very near the hospital.  Houston needs lots of help to recover from this tragedy.

ruthwilliam

ruthwilliam

 

Hurrican Harvey

William and I are a few of the fortunate ones.  We are high and dry.  Our little area was spared.  I am so glad.  I do not know how I would have handled having to evacuate with William.  I am very thankful.  We have been watching the news round the clock and it has been scary.  Today for the first time, I drove out to the grocery store.  The store was out of bread and eggs. Some of the produce was not available.  But, all in all it was a nice little outing.  I have been spending my time walking the dogs and quilting.  My YMCA was flooded and the parks that I walk to are flooded.  So, I just walk around the neighborhood.  We have had cooler weather.  Not the high 90's.  It actually is in the 70's at night and early morning.  This does not feel like summer. one morning,. I gathered up all of the extra blankets and towels and some clothes.  But, I had nowhere to bring it.  A lot of the roads are not passable.  Besides the fact that I have to be available to take care of William.  I may just have to bring it to goodwill later.  Most of the shelters near me have all gotten all of the donations that they need and are not accepting any more.  People are so generous.  Lots of airlifts.  The road near us was a river and boats were constantly going on it.  Surreal. we never lost power or had water damage.  We are on the hospital grid.  We live very near the hospital.  Houston needs lots of help to recover from this tragedy.

ruthwilliam

ruthwilliam

 

Homebound

William's new schedule.  William is now home bound.  I do not take him out.  It has been summer and miserably hot here is Texas.   He is refusing the pool workout.  So no pool for the summer.  I may try again after the kids go back to school.  But, it depends on William.  He gets so ugly when he does not want to do something.  I fortunately go to the gym every morning by 5 A M.  I get my swimming done and yoga.  I usually get a 3 hour respite from caregiving.  I get home and take the dogs to the park for their hour walk.  I don't get to exercise William , so I exercise my dogs. I get home. Bathe the dogs and then walk William to the living room and prepare his breakfast and give him his morning meds.  He cannot walk by himself.  I move the left leg and he moves the right.  I set him up with you tube and he gets interested in a documentary.  He will stay out there until 11 or noon.  I will walk him back to the bed and he will nap for 1 or 2 hours.  I get him up and give him lunch or a snack.   He will stay up and listen to music or play ping pong on the Nintendo.  Or I will find a movie ( either Patton or the Tuskegee airmen).  I usually clean the house and do laundry or shop.  When I get my work done , I work on my quilts.  I need to go and let William get up to listeten to the news on hurricane Harvey.

ruthwilliam

ruthwilliam

 

8 years as a caregiver

Time flies...having fun or not. William is still not able to walk on his own. We do make it to the pool about 4 times a week. I have decreased our workout time to 30 minutes. We used to do an hour. That is about all that we do.
Our day goes as follows:
William gets up around 6 am and Wa Him to the recliner. He takes his morning meds and has something to drink. I get him back to bed and I get to the YMCA and start my morning routine. I usually do laps for 30 minutes and then take a water class. I do a yoga class or weights or a cardio machine. I usually have 3-4 hours at the gym.
I make it home and get breakfast for William. I next take the dogs out for a walk. We usually get to the park and walk for an hour.
Now it is noon or 1 pm. I take William to a different YMCA that has a therapeutic pool. We will get home in an hour or so. I usually buy a subway sandwich for William on the way home. He is usually hungry.
By the time we reach home 30 minute drive...William is ready for a nap.
I do the laundry and walk the dogs. The usual clean the house and cook and shop.
I take William to the Ymcas monthly luncheon. I have stopped going out to eat since I have retired. I have more time to cook.
I have my weekly ladies bible study and monthly luncheon with friends.
I have not been taking William to church since he has gotten more confused. I watch church on Tv.
I got rid of cable and have an indoor antennae that works well. William likes to watch Patton over and over again.
We are used to our new routine.
I enjoy my free time at the gym. I have not missed work. My day is filled up.

ruthwilliam

ruthwilliam

 

Retirement

I have been retired for 5 months. It is funny but I do not have time to miss work. People ask me occasionally if zi miss work. I tell them that I am too busy taking care of me husband to miss work. I find that I am, able to keep myself, William and our three dogs in better health. I make it to the gym daily for myself. Usually 3 hours per day on me. Them an hour walk in the park for the dogs. Then 1 hour if water therapy for William I am tired by afternoon. I get the house and laundry done. William is enjoying his time more with me at home. I get history movies on tv for him to watch. And get him to the pool and out of the house more often. And of course get him different things to eat and drink. Life is good.

ruthwilliam

ruthwilliam

 

4th of July

Today is the 4th of July. I was going to take William to the pool. But, I am having second thoughts about that. It is very early in the morning 5AM. Yes, I am still waking up early. William has been acting up at the pool. I don't think that I want to put up with that today. I have explained to him that I do water therapy for him for his benefit and not mine. Yesterday, He did nothing. I had him stay home all day and he was fine. I went to the dog park and exercised the dogs and then went to the YMCA and did swimming and YOGA for me. I love our YMCA. IT is the best outlet for me. Yoga has been so good. They have what is called power yoga today. I think that I will go to the YMCA now and swim and use the hot tub. I might even use the weight room. I must suggest Yoga to anybody that has not done it. The stretches are so good for you. I just do not feel like messing with William today.   Lets see if I have a change of mind when I get back from the gym. He really does hate water therapy and I HAVE made him do it for 8 years now. It has helped him. But, why fight him?

ruthwilliam

ruthwilliam

 

Retirement

I have been retired for 9 days. I thought that it would be harder. It was for the first 4 days. But this week it is easier. I am a caregiver and therefore I do not have as much free time as the usual retired person has. I feel like I am crazy. I have always been an early person. I am still waking up at 4AM. But, I have been using my time and going to the gym. For a couple of days William actually was up andI took him and got his therapy done. But, then he started to rebel. So I just went on my own and let him sleep. I have a 6AM yoga class on Wed and thurs. I do my weights before I go to yogA AND THEN I manage to swim a few laps after and then I make it home to check on William I get home about 7:30 - 8 AM. Then I get William up and take him to water therapy. But today. I am having a new hot water heater installed. So i have to stick around the house. Depening ....how long this takes. I will take William to water therapy afterwards.   William has started to be beligerant about taking his pills. I have a sign up "NO PILLS then STROKE or DEATH". He does not like that sign. But, I explain to him that it is decision. Take the pills ...but there is a consequence and I will explain to the doctors that it was Williams decision. He really hates to hear me say that. Anyway, it usually works and he takes his pills.   Friday. William has a dental appointment to get the permanent crown put on. These appointments mess up my schedule.   But next week. I will have my routine and his worked out. Tuesday. We add on a bible study that I take him to at 11A. So I try to get his water therapy done early. Take him home and have him rest. then get him up for bibile study. I can usually slip out and take a class at the gym when he is sleeping. Or else I take our dogs to the dog park. I walk for an hour and they play around.   Of course there is the usual, laundry done early in the morning. I usually change the sheet and wash them every other day. this means a load of laundry every day. I like to hang the sheet outside to dry.   I am a fanatic about the floors. I steam mop them twice a day or even 3 times a day. I love to feel clean floors beneath my bare feet.   I volunteered at the community garden on Tues night. I really worked up a sweat pulling weeds. I have my ladies bibie study tonight. William is usally fine my himself or a hour or 2.   I longer have a caregiver since I am available all of the time. I am afraid that I suspect that my caregiver's husband was stealing from me. I had to let her go.   As my son said we are a vulnerable population for getting taken advantage of from people. You let people into your lives because you need them and then something like this happens.   I am conflicted about talking to her. She does not believe that her husband is capable of this sort of activity. But, I cannot afford to have her around because of him.   The hot water heater people are here now and work is started. Let's see how the day goes.   What is funny, Is that now that I am at home. I seem to have less time to eat. It has been 5 hours since I got up and I still have to eat breakfast.   I got some eggplant from the community garden and I still need to figure out what to do with it. I think that I will try an eggplant casserole that A lady was talking about when I was at the grocery store. I also got some malamar spinach. It is different and I need to figure out what to do with it.   I made a whole wheat pasta , collard green, asparagus, chicken salad. Very healthy. I did not put any dressing on it. But, William did not like it. I will bring it to bible study and have the ladies try it.   I am having time to cook, garden, play with the dogs. I am thinking of looking into some senior classes at the community college. But that will be next session. There is a lot to do. if you can make the time to do it. I also want to try to train one of my dogs to be a service dog.

ruthwilliam

ruthwilliam

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