Adjusting to the decline & hospice

pookabera

Hi everyone, we have a nurse practitioner coming to the house next Friday and then the week after that we'll be having a virtual visit with his new physician.

I've also been in contact with a hospice/homecare group for about the entire time he's been home. She checks in on how he's doing, and she recommended this new physician to us.

For the past week (and a bit longer) my dad has been refusing food and sleeping way, way more than he was before. We know that this can be part of the entire dementia journey and decline, but we're struggling with making this transition as caregivers.

We can't force feed him, but I feel like we also can't rely on his ability to sense if he's hungry. I've also read that you should let loved ones with dementia sleep, which is what we've been trying to do.

Should we see if the hospice group can come in before the nurse practitioner? What should we be doing? We're on the hospice track and that's been our plan from the beginning - I recognize what's happening as part of the progression, but I don't know how to handle this day-to-day..

M1

Hi pookabera, it's hard to feel like you should be doing more, but honestly, at the hospice stage, things boil down to one simple question: is he comfortable? If he is, so be it. If he's not, what would make him more comfortable? That's all that matters.

harshedbuzz

I would bring hospice in asap.

If he's refusing food and sleeping way more, he could be transitioning to his final days (or not). As a person nears death and the body starts to "shut down" the lack of hunger is reliable-- the body is wise. At this point, food and fluid could be uncomfortable for him or even dangerous. Hospice should be able to help you determine if that's where you are.

My aunt went through 3 periods in the last 18 months of her life where she slept almost constantly and didn't eat or drink for over a week, before reversing course and accepting food again until the 4 time when she passed within a weekend. My father didn't do this and died of aspiration pneumonia 10 hours before his hospice in-take appointment which I regret. My mom could have benefited from their expertise and spiritual support.

HB

pookabera

https://alzconnected.org/discussion/comment/186937#Comment_186937

Thank you, this was helpful. We were shocked at the beginning of this week. When I said bye to him Sunday night and that I'd see him tomorrow he said to not bother and he might be dead tomorrow, and I said okie doke then. And then Monday he asked for food twice and was a bit more "with it" than he has been.

So glad I read your response that weekend because the emotional whiplash would have been even worse than it already has been.

His new nurse practitioner visited this Friday and agreed that we should have palliative care follow up. So hopefully that will be getting scheduled soon.

pookabera

https://alzconnected.org/discussion/comment/186898#Comment_186898

This is incredibly helpful, thank you. We're looking forward to our follow-up with palliative care, I think it'll relieve me of some of the overall angst. Hopefully.

Battlebuddy

Definitely call for a Hospice evaluation. It can’t hurt. If they don’t think he is ready , they won’t put him on. My husband was on Hospice two years and got great care throughout. A year before that ( 3 years before he passed) he was evaluated by Hospice and they said they didn’t think he was quite ready. Never hurts to try

pookabera

https://alzconnected.org/discussion/comment/187721#Comment_187721

Thank you, we have a palliative care evaluation tomorrow. A little nervous about the whole process and how he's going to react to more people showing up to bug him, but I know getting this process started will be for the best in the long run.