re: Close relative is in hospice...(update page 5)

My grandma is pretty bad off but seems to live mostly in a world where my grandpa is still alive, and we've always envied that in a way. Dementia seems to be harder on everyone else than the one suffering from it, at least from my experience

I doubt that any two dementias are alike.

I remember an old lady in geriatric evaluation who walked up to me and asked, very nicely, "Do I know you?"

Our two family members who were there had a whole different set of problems. My FIL had been a NYC Cop and knew how to flash his badge to get out of fines, etc. He never got a ticket, but avoided many. His dementia was probably Lewey Body and he thought he was seeing dead bodies. Never pulled out his badge, because he had dead bodies to report. Except they weren't there.
(There was the time that his cat was locked in the guest bedroom and that locked door made the local police wonder, until they got the door open and the cat ran out. And he said, that cat looks just like the cat I buried in the back yard. (So we took the cat back, taking care of her had probably kept him 'normal' for over a year.

It’s so hard to watch unfold. It’s like a long goodbye.

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So many people longing for some interaction. I made it a point to smile and say hello to everyone I walked by while in there.

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I do this as well…I actually enjoy the company of elderly folks. There is no need to ignore them when it takes so little effort to make their day.

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in there...somewhere

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I believe they are. It helps. It's such a difficult thing.

Nothing philosophical, but the steps are real. There will a moment of lucidness toward the end. We were fooled by it with my grandfather.

Damn!

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Another thing is any stressor sends her over the edge...She had a UTI that put her in the hospital last week and while there she lapsed into delirium. Like something you'd see in a movie. Completely out of touch with reality. Didn't know who or where she was, etc. She didn't sleep for 24 hours and they finally give her a shot to knock her out. When she woke up she was much better although a little confused for a few more days. She's been in rehab since last Friday to get her strength back and the last two days her mental state has been better than it's been in a long time. I pray it continues.

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This is actually a reasonable approximation of where we are now. He was laid low by covid and then a UTI during the summer (they took him to the hospital both times, which I didn't agree with), both of which seemed to just take the complete wind out of everything and cause permanent decline. I moved him over to skilled nursing (finally) from memory care when it was clear he wasn't going to improve. Still, he was verbal and more or less (seemingly) content.

But since then, he's become essentially entirely non-verbal, and then yesterday had the delirium and twitching (like a movie). The big change in the past 36 hours has been the no eating. Through all the recent travails, the appetite has never gone away. But this time...the hospice nurse thinks his brain might actually be shutting down in real time. I have opted for pure palliative from now on.

Thank you to everyone in this thread who provided testimony as well as kind thoughts. I guess my point in this thread was: it's so easy for me (as the person tasked with making the decisions) to just be "I hope his angel comes and takes him quietly during the night". But I'm terrified of being too casually dismissive of another human being's lived experience. What if what we see on the outside isn't indicative of the internal reality? This person only has this one life - who am I to declare it not worth living?...

My dad passed in late February in hospice after a long battle with dementia. For him, hospice was the best case. My mom was his sole caregiver for the last few years. Toward the end, she was unable to continue in that role. He became too much for her to handle, with falls, etc.

We searched for places for him to go for a few weeks after finally convincing my mom that she couldn't do it any longer. We tried for a long time, but she wasn't having it.

Finally found a place we were all comfortable with. Moved him in on a Monday. He had a bad fall that night and was never the same. Was put into hospice care on Tuesday. He couldn't speak from that point on. We were able to feed him for about a week, but he was in and out of consciousness. The following Thursday, he went into a coma-like state.

I arrived at his bedside on the next Monday after a day at work. My 16 year old daughter had just been to visit him, and we chatted outside for a few minutes before I went inside. I got to him and he was struggling to breathe. My mom and I had the nurse come in and check on him. She raised his bed up to help with his breathing. No sooner had she left the room then he passed.

I'm struggling to type this with tears in my eyes. I miss my dad. I miss who he was before this terrible disease took him from us.

Prayers to you and your family.

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The gist of the conversation makes me believe that their lucid mind is caged in a dying body. I really hope I’m wrong.

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Doesn’t sound much different than ALS if you put it that way