u/Space_Plenty

I care for my dad who is 80 and on hospice with Congestive Heart Failure and AFib. He’s been remarkably resilient since he started hospice. He’s on his eighth month, and overall he’s pretty stable—edema is under control, good BP and O2 levels. However, for a number of reasons, he’s unable to walk on his own anymore, and over time he’s getting more frail.

Seeing how bad he was when he started hospice, I am amazed he’s made it this long, but I also recognize that what he’s going through isn’t reversible. You can slow the course, they may even take him off hospice at some point, but his particular combination of problems will eventually catch up with him.

I have a lot of anxiety around what the end of his life looks like—whether it will be a sudden event or something more gradual. If you have ever cared for someone who passed away from CHF, what signs would you point to that signaled they were approaching the end of their life? How long did they live beyond that point? Sorry for heavy topic, but definitely appreciate you sharing your experience.

My dad is in hospice with CHF and AFib. He's also dealing with a neurological condition, which causes severe balance problems, occasional disorientation, and slow cognitive decline. He's been on home hospice, but they may discharge him as early as next month because he's been stable. (Anyone who's been through a hospice discharge knows that "stable" doesn't necessarily mean "okay".)

I'm his sole caregiver. I recently bought a house about an hour away from where he currently lives, partly as a future for myself, partly with the hope that he'd eventually move in with me. He refused the move at first, which was gutting. But he's spent some time at the house since then and says he likes it there, so that door may be open again.

I'm weighing two main scenarios, and I genuinely don't know which is the best:

Scenario 1 is that he moves in with me. I'd handle relocating him, getting him set up with new doctors, and managing the transition. The upside is that I could remain his caregiver but  I'd finally be living my own life in a place I want to be, and once his current home sells, he'd free up enough income to contribute to some private caregiver hours on weekends. The downside is that it's a massive logistical lift, requires some family cooperation that isn't guaranteed, and puts all of his care on me full time until his house sells.

Scenario 2 is that he stays where he is and we transition him into a PACE program after hospice discharge. I've already verified he qualifies and there's a center that would serve him. PACE would coordinate all his medical care and give him some structure and social connection, which he needs. The center is about an hour from his house, which worries me given his extremely low energy levels with CHF. And because he's paying rent, he may not be able to afford much private caregiver time beyond what PACE provides, which means I'm still stuck sleeping on a folding mattress in his living room indefinitely. 

I'm also thinking about a hybrid: bring him to live with me on a trial basis, and if he hates it, pivot to scenario two, or the other way around.

I guess what I'm looking for is: has anyone navigated something like this? The tension between wanting to do right by a parent and needing to actually have a life? What would you choose in this situation?

My dad (80) is on hospice and can't stand or walk without assistance. Mentally, he still thinks he's capable but he can't do much without help anymore.

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I am his full-time caregiver and I sometimes get frustrated when he tries to "help" even though I know he means well. Everything from holding his diaper in place when I change him (his hands get in the way), to offering to do chores or cook dinner (there's no way for him to do either safely). I think it's wonderful that he's the kind of person who wants to pull his own weight, but it makes things harder and this caregiving thing is hard enough already...

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I don't know how to help him understand that he's a bigger help by letting me do it myself. If he did try to help, it would take five times longer and he'd put himself at risk.

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How do I explain this to my dad without making him feel useless?

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I recently found out that my dad's hospice has a respite benefit for family caregivers. They'll put him up at a nursing home for five days to give me a break.

I definitely need a break. I am SO burned out… but the whole reason he's on hospice is because he was stuck in a terrible skilled nursing facility for a month after getting hip surgery.

The idea of putting him back in a SNF, even just for a few days, seems like it would be a very unpleasant experience for him. I don't want a break if it puts my dad's stability at risk…

My dad and I live in two different counties in SoCal, but I have been his unpaid caregiver since my mom left in 2024. There is no one else who can help.

I've been trying to get my dad onto IHSS for many months. Today he finally had his in-home evaluation from a county social worker, and we found out his share of cost is essentially too high to benefit from the program.

The social worker suggested looking into PACE programs in his area. It seems promising, but the catch is I'd still need to be at his place every night as his overnight caregiver. If I wanted to go home, I'd only have a couple hours during the day. It would be an improvement over where things stand now, but not by a lot. For context, my dad currently lives in a mobile home and pays rent for the space, utilities, and a neighbor to walk his dog.

The other option is he moves in with me, sells his place, and uses his Social Security to pay for a private caregiver part of the time. I'd still be his unpaid caregiver most of the time, but I'd have a little more flexibility to have a life outside of caregiving and my full-time job. The downside: he'd lose the daytime social engagement and programming that a PACE center would provide. (I looked to see if there was a PACE that serves my area, but there isn't.)

One complication worth noting: my dad is currently on hospice, but stable, so he'd need to transition off hospice before he could participate in PACE.

Also note that selling his house would fall 100% on my shoulders, and would be a massive challenge given everything else I'm juggling.

Has anyone had to weigh decisions like these? What worked, and what do you regret?