Advanced dementia, sleeping all the time

[harriethoyle]

DF has had dementia for coming up 8 years. He is bed bound, non-mobile, mainly non verbal (in that he now babbles rather than forming proper words and sentences) needs 24/7 care and is in a care home. Since New Year, he seems to be sleeping far more than he was. I visit 3-5 times a week and he’s perhaps exchanged 20 words with me in the last three months. It’s the same regardless of time of day for the visit.

For those who have walked this path - is this simply the next stage, and I have to resign myself to it or might there be something else at play, or anything I should ask the doctor to look into?

In all kindness this is continued disease progression. Please chat to the staff in the care home they will have seen this many times. If you have not already done so it would be a good time to consider ceilings of care things like antibiotics or not for a chest infection, stay in the home rather than admit to hospital, not offering high calorie supplemental drinks as desire to eats declines.

Thanks @Twizzletoe - I thought was probably the case but there’s always a stubborn bit of hope left... 😭 We’ve got a lot of advanced directives in place, DF still eating well but I’ve decided against peg feeding, intrusive treatment etc and we have a DNR in place. It’s just very hard.

It certainly is a really cruel disease. I work in a hospital and am involved with many frail patents with dementia who are admitted with fractures after falls. If your dad may be admitted ask the care home if they send “this is me” or similar info in. It can be so useful to know what people used to enjoy doing or what significant family names are, even what music we can play to sooth them.

He still loves the Rolling Stones @Twizzletoe - I put them on every time I visit!

Yep, completely normal. It’s a horrible disease.

I read somewhere @Birdseyetrifle that you grieve three times with dementia: at diagnosis, at the point that they don’t recognise you and then at death. There will be a lot of relief for me when DF dies and I feel terribly guilty about that.

I’m so sorry you are going through this. It really is heartbreaking disease. A very slow, in most cases, loss of the person you love and know.

There are a few good books about it. Contended Dementia is one.

Please don’t feel guilty about this. It’s perfectly natural. I felt that same and I have absolutely no doubt that I my parent wouldn’t have wanted to live in that state and I didn’t want that for them either. By this stage, I think the suffering is your rather than his. I wish you all the best. It’s just so hard.

My MiL has had Alzheimers for about 4 years and each time we see her it seems to have progressed. She sleeps virtually all the time and doesn't really know what's going on at all. I think if she wasn't woken up at about 10am, she'd just sleep all day.
So sad.

Thank you all and for the book recommendation @Birdseyetrifle - it’s a hard road to home, for sure. But we keep on keeping on! No other choice.

Don't feel guilty. Guilt is there to help push us towards doing socially beneficial things. You're already doing the right thing. At the stage you are now, it's just about choosing the least worst out of a bucket of crappy options, sadly.