Dad sleeps all the time

[Kitten71]

Dad has had Lewy body dementia for around 8 years. He recently had a chest infection which needed 2 courses of antibiotics to clear it up. Now he seems to sleep all the time.
I fear he is nearing the end as he eats and drinks very little. On the other hand I think that maybe he is just feeling run down and tired after his illness.
I feel like I can’t slowly watch and wait for the end which might not come. We’ve been here several times before and then he’s rallied and become his usual self again. I feel tired and exhausted from it all. I feel so sorry that he’s going through this, I love him to bits and it’s so hard to see him as he is.
What can we do about his eating and drinking when he’s asleep most of the time? How will we know when the end is really happening? I’ve read all the end stages info and dad has been displaying most of the symptoms for months now. I’m not sure any of us can take much more

 

[karaokePete]

I’m sorry to read that you Dad is having a rough time and that you are at a rough stage yourself.

On the food issue I wonder if having fortified shakes and finger food available for the times he is awake so that he can graze would be a help.

It’s an unfortunate reality that the end stage can last a long time and I wish you the strength to see it through.

 

[Kitten71]

I’m sorry to read that you Dad is having a rough time and that you are at a rough stage yourself.

On the food issue I wonder if having fortified shakes and finger food available for the times he is awake so that he can graze would be a help.

It’s an unfortunate reality that the end stage can last a long time and I wish you the strength to see it through.

Thank you for taking the time to reply. I find myself wishing for dad to fall peacefully asleep and not wake up instead of this slow trudge to his grave. I’m wondering how I can cope with it when the end could be months away. I feel dreadfully selfish and guilty for my thoughts and feelings but I just want my life back now, rather than watching a life fade away in the most undignified way possible.
I’m piggy in the middle for my family too as a couple of them don’t speak to each other and I get super angry that I’ve ended up in this position. I said I wouldn’t act as a go between but neither of the others would speak unless it’s via me, so I’ve reluctantly taken that burden on too. I just want to run away and start again with a lovely new life where everything is perfect. In the meantime, I’ll try and pull myself together and get on with the life I have, and get myself off for another visit to dad.

 

[karaokePete]

Your thoughts are entirely normal and to be expected so don't feel bad or be hard on yourself.

Dementia can be very demanding on we who choose to care. Families who war, and do little, are an all too common complication that I also experience with my wife's family(we are a second time around couple).

It can be both an emotional and physical roller coaster that we suffer alone at times. You will always find someone on TP who will understand you so don't ever be afraid to post.

Here's a virtual ((HUG)) and a from me. Stay strong.

 

[Kitten71]

Your thoughts are entirely normal and to be expected so don't feel bad or be hard on yourself.

Dementia can be very demanding on we who choose to care. Families who war, and do little, are an all too common complication that I also experience with my wife's family(we are a second time around couple).

It can be both an emotional and physical roller coaster that we suffer alone at times. You will always find someone on TP who will understand you so don't ever be afraid to post.

Here's a virtual ((HUG)) and a from me. Stay strong.

Thank you! Sometimes it’s hard to put that brave face on and look like I’m holding it all together. A good cry works wonders, along with a listening ear from someone who knows the trials and tribulations of the dementia world, and I really do appreciate your kind and supportive words. I do feel a bit better now, I guess I’d been keeping things in and eventually burst! This illness must be one of the most harrowing experiences for a family to deal with. It’s almost impossible to explain it to someone who hasn’t experienced a person with dementia and all the associated stages. I suppose that’s why coming on here to have a rant is so beneficial Thank you for your support one again, it truly means so much to me

 

[Kitten71]

My dad sleeps all the time. He has done for around 3 years although these last 18 months have been worse. It's impossible to say whether it indicates one thing or another. He always was a bit of a snoozer.

Dad is now in a care home. He walks around at night but at least in the home the carers do just cox him back to bed. But he sleeps most of the day.

I don't know how long on average each stage lasts. I guess it is very variable.

It's not wrong to hope that a person suffering so much will just slip away in their sleep. Why would anyone hope they would live a bit longer, so get a bit worse, and suffer even more. I see my dad and just want to cry unconsolably and have him hug me, but he doesn't even know who I am and has no real interaction. In the end, dementia even robs you of a proper goodbye.

It’s just so sad isn’t it? I know what you mean about wanting a hug. My dad has no concept of what one is anymore but he is quite ready with his kisses so when I catch him awake, I make sure I get my quota.
My dad was also a bit of a snoozer so maybe it shouldn’t be any surprise that he’s sleeping his last few years/months/weeks away. I just have to hope he’s pain free and happy now and try and deal with my feelings until the bitter end. At least we know we aren’t alone, there are plenty of others in this sorry situation, and it’s great to be able to rant on here when it all gets too much x