End of life with dementia

tboard · October 3

My DH is in a transition phase between life and death. Hospice has given us information about what to expect but it doesn't make sense. Supposedly my DH can now hear us even though he hasn't been able to hear for a couple of years.

During this phase we are supposed to share memories with him but he doesn't even remember who I am. He seems to understand that I am someone he knows and he likes it when I talk to him and it doesn't seem to matter what I talk about.

He sometimes talks to his father as mentioned in the literature but he has been doing that for a couple of years. His father died in 1972.

It might give us peace to consider all of these magical things happening as a person with dementia dies but to me it feels like he went away a long time ago. With his damaged brain and limited ability to do most anything I question what the literature says about end of life and what might be going on in his brain.

Alzheimer's and vascular dementia damage the brain so that it doesn't function properly. The damage isn't reversible and doesn't just go away at the end of life, which means that much of the stuff in the pamphlets hospice gives us is BS or maybe wishful thinking.

Maybe one day they will have more appropriate materials for end of life for people with dementia instead of giving us one more thing to worry about.

Ed's mom · October 3

Sorry you're dealing with this on top of losing your DH physically. You're a hero, remember that.

harshedbuzz · October 3

@tboard

I am so sorry you have reached this place in the progression of dementia and are feeling unsupported by the materials offered by your hospice provider.
HB

jgreen · October 3

Dear @tboard

I don’t think anyone knows what is going on in the brain, especially when it is extremely compromised and dying.

I just placed my DH on Hospice this week. He is stage 6c so not in that ‘transition’ phase. I do hope to keep him home through this and be there with/for him when he dies. And in my humble opinion, gentle touch, kisses, hugs and calm soothing words from me might be the only thing he can sense but it is the best and last gift I will give to him.

May God hold you close at this time. Please accept a hug from me.

💝

dcare45 · October 3

My heart goes out to you @tboard at this terrible time.

I find myself again agreeing with @jgreen . My DW has aphasia and I don't believe she always understands what I am saying however she does enjoy and relax when we are touching and I am talking to her. It seems to give her some comfort. Maybe that is all we can hope for in the end.

Quilting brings calm · October 3

Sometimes well-meaning advice does more harm than good. Just do what feels right to you. You have a much better understanding of your husband than hospice does. I agree with you that his capabilities aren’t magically improving in his last few days of life. If you feel like talking, talk. If you feel like touching him, do that. If neither feels right to you, then do neither.

A. Marie · October 3

My DH went down so fast at the end (3 years ago now) that there wasn't time to call hospice in. He, too, hadn't known me except as a familiar presence for a long time. But all the same, I sat by his bedside on the last morning of his life and told him everything I wanted to tell him then—most importantly, "You're the best man I've ever known, and the best husband any woman could have wished for." (No lies; he was.) I went home at noon to grab a bite to eat and start notifying our families—and by the time I went back at 2 pm, he was gone. So I think—or at least I'd like to think—that I made his passage easier. Even if I'm all wet, it definitely helped me to say all this, and I hope it'll help you to say anything similar that's true for you. Please try it. And I send best wishes to you and your DH.

annie51 · October 4

My heart goes out to you @tboard. There have been many thoughtful answers here and I agree that you should do or say what you feel will give him comfort and what will give you comfort and closure. Sending hugs 🫂

Snipe · October 4

Several years ago at one of my DWs first visits to the neurologist he looked at me and and said something like; As much as we want to pat ourselves on the back about how how far we’ve come and how much we know about the brain, this is still an area where we don’t know enough yet. No one knows your DH better than you. Do what you feel is best.

tboard · October 4

https://alzconnected.org/discussion/comment/283575#Comment_283575

You bring up a good point. Also my DH does not want to be touched at all except for when I hold his hand. He definitely doesn't want me to make a lot of noise. He is hard of hearing so talking doesn't help much. I think we need to read the room when deciding what might comfort a loved one as they transition.

End of life with dementia

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