Hubby recently entered hospice care, which changes everything

I just found this forum, after posting a question about caregiver support in the general Q&A area. This place is wonderful! Been a long time since I've checked in here, and had forgotten how incredible it, and the people here, are.

So, hubby. Elderly, multiple health issues. I guess I started my caregiver role when he started agreeing for me to attend doctors appointments. Through the years, and time came for palliative care. More time passed, and last week, on the advice of the palliative care nurse, we switched to hospice.

Even before we went with palliative care, I entered into anticipatory grief. Last summer was brutal. Lots of bouts of crying jags, depression, and more.

So here we are, today. Week 2 of hospice care. I'm not a fan of the hospice team. For now, I'm giving them, and myself, some time. I might just be missing the palliative team. Or the hospice team might just really suck that much, and I'll end up either going back to palliative care, or finding a different hospice team.

Things I'm currently struggling with:

does hubby even really need hospice care at this point? If yes, it's extremely early days, and this will be a long term thing. Nothing "imminent". Too soon to tell.

Attitudes and opinions of family (mostly his) and friends. He's only just started telling his family he's now in hospice care. As his health has declined over the past two years, there's been lots of unhelpful chatter from those around. I get where they're coming from, and I know they're just trying to help, but man, are they really bad at it!

My current thinking is, to refuse to discuss it with his family / friends. Not in a nasty way, really, but the dynamics have been that they all come to me for info, details. Partly because he is at the confused / disoriented often stage. That's a dynamic I want to change, because, self care. Clearing some things off my plate, and dealing with them is something I can easily give up. So, yeah. My mantra is "ask him if you have questions". Problem with that is, he's giving out incorrect info.

Another thought I'm having is, when they come to visit, to absent myself. Again, self care. When others are with him, that's a good time for me to take a break, go do my own thing. Relax, recharge, handle things away while I'm not having to worry about him being left unattended. Hospice people agree with that....but family, not so much. They arrive, I leave, go take a nap, get on computer, come here, go for a walk, do some gardening, take a ride. They see that as rude.

They're good people, really. I don't want to blow up my relationships with them. But now that things are changing so much, I'm needing to devote more time to my own mental health issues and stability, and self care. That's the kind of stuff they've never understood, really, and that they aren't being very tolerant of now.

Are there better ways to handle this stuff? Are there things I'm not thinking of?

I’m so sorry you’re going through this.

I wish I could say something to help. One thing that occurs to me, for the filtering down of information could you have some central info point like a WhatsApp group to have crucial info posted? If this is something you would find stressful could you delegate the task of running such a group to someone who you trust? You’re absolutely right, it’s not on to keep asking you questions when you’re dealing with your husband’s welfare and your own well-being, and it’s not appropriate now that your husband is asked either.

My heart goes out to you.

Maybe the hospice people could deal with the visitors a bit? I guess they cant say a lot because of HIPAA as far as details about his situation, but they could say stuff like, "we encourage the primary family member to take advantage of visits to refresh themselves. So we appreciate you coming to visit, it really helps both of them." That makes them part of the team.

My suggestion would be to start an account at caringbridge.com and tell all the family you will post a daily update. This will help you and the family, but you will need to tell them tat this is where they can find out info.

I'm so sorry, dear one. I think hospice used to be for people who were probably going to pass away around six months or fewer months . I've had relatives in it before. I would think it would be a lot of support--and of course, people can live a long time on it.

@Deejay14, I've recently stumbled upon the Caringbridge site. I wasn't sure it would be helpful to me, but I'll check it out again now that I'm in a calmer state of mind. @Travelinglady....I've always heard great things about hospice care. That's why I'm kind of confused that I'm finding it so....less than. Time will tell me, I suppose, if it's just this particular organization, or my own mixed feelings, or the timing of it that I find "off".

At this point, I'm starting to suspect that I'm just feeling "whine-y". Had hoped some of the weight might be lifted off me, with hospice, and I'm not feeling that relief (yet), so, having trouble managing my disappointment. On the flip side of that, I know that it's entirely on me to manage my own mental health issues, and do the work I need to do to keep myself strong and regulated. I just get so tired of the daily struggle of that.

BUT. I have spent the last few days outside doing yard work, which is a really good thing for me. I've got an upcoming appointment with my primary doc, too. Might be time to consider going back on citalopram for a bit.

Update time. I'm still not appreciating hospice. I'm still thinking it's stemming from my disappointment, in what I'd hoped for, versus what it is. I keep having thoughts that what they are doing is making things harder for me, not easier. But....that's me....my mind. Which is a battle all on it's own. They have managed to get hubby to start using a quad cane, which helps. They've got a wheelchair here now, for when he gets to where he has to use one. They've got a toilet seat that is a bit higher than the toilet we had, and he has said it's helpful. They got the defibrillator turned off, which was a concern. So, yeah. There's been benefits received. I guess I need to spend more time realizing, and appreciating, the "wins", and continue to try to manage the emotions stirred up. Meanwhile, I'm carrying around a boat load of bitterness, and frustration, and aggravation, and sadness. If I dig deep enough I'll probably uncover some guilt mixed in there, also.

So I guess what I'm realizing is, what I need, is what they aren't equipped to provide. My mental health issues aren't things they are set up to deal with. Silly me, looking to the specialists in dying to seek assistance for the struggles of living.

I did create a caring bridge page, for the fam/friends. As they are being told he's in hospice, I've been directing them to it. Only 2 so far seem to have even gone to it. Still, I guess it's been helpful to me to have started it. I'm wanting IT to be "all about him", and so sometimes am struggling to keep my own feelings out of it. Just....report.....updates. Needs. Requests. Why? Because I don't really want to post my thoughts and feelings out there to the others. That's what I come here for. :-) A safer place, for me.

Today was a rough day. I've not been doing great at handling all my emotions, and mine triggered his. I don't think it was necessarily a bad thing. He's been spending a lot of time reminiscing, and today, once he got into a highly emotional state, he started processing long buried emotions from way back in his childhood. Expressing feelings he's never shared with others. Well, that is stuff I certainly can relate to. Hopefully I was even able to help him, some, once I was able to get out of my own head, and realize what was going on with him. He seemed calmer, more at peace, after.

Man, but this is a hard rough road. But I keep reminding myself, I'm choosing to go down this road with him. It's not my road, really - it's his. And I want to light the way for him, help to smooth it out as I can, for him. I've got this. Even when I stumble, even when I fall. Because I can, and will pick myself back up, and keep on going.