Dad in end stage Lewy Body Dementia

[TracyR]

Hi, this is my first post although I have read many of them in the past but I am so mixed up I dont know how I feel or even how I should be feeling.

My wonderful Dad has Lewy Body Dementia and declined quite rapidly about 5 weeks ago after going into respite for 2 weeks. My Mum was doing a fantastic job as his carer but was absolutely exhausted. Dad then got pneumonia and has spent the last 3 weeks in hospital. He recovered from the infection very well but is now unable to walk, and has to be hoisted in and out of bed into a recliner chair, he is doubley incontinent, eats a litte pureed food and has to be constantly encouraged to drink (sometines using a syringe) and indeed to swallow it. He will on occasions open his eyes and mumble something but its as if he really doesnt have the inclination or the stength to be awake.
It was impossible for Mum to have him back home so regretfully we have had to place him in a new nursing home this week. Before he was discharged from hospital we had the "talk" with regards to end of life care and DNR etc and that it is now time to just keep Dad as comfortable as possible.
I'm not even sure why I am posting all this, but I just dont know how I feel. I'm in tears one minute, fine the next and then hoping that my lovely Dad doesnt suffer this terrible disease for much longer. I then worry about my poor Mum who is really struggling to cope and then my mind starts going to overdrive and how i'm going to be in my old age and that I dont want to end up like Dad.
I work full time and have a wonderful supportive husband but I just cant concentrate on anything, this really is like a living nightmare that seems to get worse as each day passes.
I feel as if I have "lost" my caring, strong and fun Dad who had a wonderful sense of humour and we used to always be laughing and now when I see him he often has tears of sadness rolling down his face.

 

[TinaT]

I'm so very, very sad to read your post. It brought back painful memories of my husband's last few weeks of life suffering from LBD.

I managed to get him in a hospice for the last few weeks of life where staff were well used to dealing with all the things you have described in your post. However after a week my husband rallied a little and I was told he had to be moved out to a nursing home. I was luck and after a few weeks of anxiety and intense worry finding a good nursing home I managed to get him into a home where I felt both he and I would be able to spend the last few weeks together without anxiety about his care.

I can only say fortunately he died on the day he should have been moved.from the hospice. I felt it was terrible of the hospice to tell me he had to be moved and knew that he wouldn't survive the move. Thankfully his body decided also that the move was wrong for him.

I wish in hindsight that I had not got him into the hospice but moved him into a nursing home immediately he deteriorated to the point where his current care home couldn't cope.



Within a few months I was faced with the same problem for my mother also in the last few weeks of her life. This time I got her into a good nursing home for the last two weeks of her life and was able to visit her every day for as long as I wanted without the worry of her being cared for properly.

Stay strong, both you and mum. Try to make these last few weeks as peaceful as possible for yourselves and your lovely dad.

xxTinaT

 

[TracyR]

Thank you TinaT,
It is all so heartbreaking isnt it. How stressful for you having to move your husband at such a difficult time. As you say, his body new best and prevented the painful move to a nursing home.
My grandad also had Alzheimers but I was a lot younger, strangely it seemed easier to deal with then but I think things affect you far more as you get older.
I love my Dad to pieces and cant bare to see him reduced to being unable to do anything for himself, dribbling and having constant tremors that he cant control (from the LBD). When he was able to speak clearer he often said he didnt want to live anymore and who can blame him, bless him.
xx

I'm so very, very sad to read your post. It brought back painful memories of my husband's last few weeks of life suffering from LBD.

I managed to get him in a hospice for the last few weeks of life where staff were well used to dealing with all the things you have described in your post. However after a week my husband rallied a little and I was told he had to be moved out to a nursing home. I was luck and after a few weeks of anxiety and intense worry finding a good nursing home I managed to get him into a home where I felt both he and I would be able to spend the last few weeks together without anxiety about his care.

I can only say fortunately he died on the day he should have been moved.from the hospice. I felt it was terrible of the hospice to tell me he had to be moved and knew that he wouldn't survive the move. Thankfully his body decided also that the move was wrong for him.

I wish in hindsight that I had not got him into the hospice but moved him into a nursing home immediately he deteriorated to the point where his current care home couldn't cope.



Within a few months I was faced with the same problem for my mother also in the last few weeks of her life. This time I got her into a good nursing home for the last two weeks of her life and was able to visit her every day for as long as I wanted without the worry of her being cared for properly.

Stay strong, both you and mum. Try to make these last few weeks as peaceful as possible for yourselves and your lovely dad.

xxTinaT

 

[Jessbow]

I am sure you are not the first to feel confused about how you feel. I certainly was. One minute I wanted Mum to live for ever, even as she was ( which was very like your dad and the same rapid decline) and the next I wanted and end to the situation- I didn't want to see her suffer like that any more- Mum had gone and all that was left was a shell.

All I can say is go with what you feel on any given day. Cry if you need to, either with mum or on your own, and just do and say whatever you feel is right. Mum is going to find it very hard, as are you.

 

[TracyR]

Oh dear poor Dad has only been in his nursing home since Monday and we have had a call to say his temperature is very high & he isn't passing any urine. Waiting for Dad to be collected by ambulance to be admitted back into hospital. A long night ahead I think.

 

[starryuk]

Oh Tracy. How worrying.
Hope your dad improves a bit today.

 

[jeany123]

Sorry to hear about your dad, I hope he improves soon xx

 

[msf]

Hi, this is my first post although I have read many of them in the past but I am so mixed up I dont know how I feel or even how I should be feeling.

My wonderful Dad has Lewy Body Dementia and declined quite rapidly about 5 weeks ago after going into respite for 2 weeks. My Mum was doing a fantastic job as his carer but was absolutely exhausted. Dad then got pneumonia and has spent the last 3 weeks in hospital. He recovered from the infection very well but is now unable to walk, and has to be hoisted in and out of bed into a recliner chair, he is doubley incontinent, eats a litte pureed food and has to be constantly encouraged to drink (sometines using a syringe) and indeed to swallow it. He will on occasions open his eyes and mumble something but its as if he really doesnt have the inclination or the stength to be awake.
It was impossible for Mum to have him back home so regretfully we have had to place him in a new nursing home this week. Before he was discharged from hospital we had the "talk" with regards to end of life care and DNR etc and that it is now time to just keep Dad as comfortable as possible.
I'm not even sure why I am posting all this, but I just dont know how I feel. I'm in tears one minute, fine the next and then hoping that my lovely Dad doesnt suffer this terrible disease for much longer. I then worry about my poor Mum who is really struggling to cope and then my mind starts going to overdrive and how i'm going to be in my old age and that I dont want to end up like Dad.
I work full time and have a wonderful supportive husband but I just cant concentrate on anything, this really is like a living nightmare that seems to get worse as each day passes.
I feel as if I have "lost" my caring, strong and fun Dad who had a wonderful sense of humour and we used to always be laughing and now when I see him he often has tears of sadness rolling down his face.

Hello I just had to reply to you, I just wanted you to know how I feel for you, my lovely dad lost his fight to cancer many years ago I watched him change too and I became his part time carer at the age of 15 to help mum out. I don't have knowledge of what your dad has, just stay strong for your mum she needs you and you seek support from other loved ones and friends, try and think of your dad how he was that is what he would want you to do I'm sure. I know he would if he was the old dad protect you from All of this, remember the good times, the dad you see now is just his she'll, his spirit, knowledge and love is inside you and helps make you who you are today, you sound lovely and caring and if he could he would be very proud of you and be great full you are supporting your mum God Bless msf x

 

[TracyR]

Thank you for the supportive messages. They mean a lot. Dad was catheterised this afternoon as he was retaining urine & blood pressure very low. Between us Mum & I managed to get him to drink some juice & a coffee. We also got him to eat some pureed food. He is a bit brighter today and did say 'whats up with my brain' so he seemed to have a rare moment of clarity bless him. We left him dozing peacefully so lets see what tomorrow brings.