Hubby recently entered hospice care, which changes everything

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.

The hospice team should include a grief counselor or social worker for the family. I can understand if the person was not helpful -- that can happen sometimes. But at least there should be someone.

My wife was in hospice (at home) for several weeks, and then transitioned back to the land of the living. It was a lot of work for me. It still is, occasionally.

In an earlier post you mentioned leaving when your husband had visitors. I can definitely relate to this! It's so important to get away for self care.

You also mentioned the ordeal of keeping everyone up-to-date on your husband's condition. One thing I learned was to designate one or two reliable people to do this for you. One could be from his side of the family; the other, your side.

Yes, there is a social worker. I'll just say he wasn't helpful for me. Hubby enjoys his visits, so, good enough, I suppose. Although he hasn't been here in three weeks. I'll ask the nurse about it when she comes back next week. Having a single point of contact for the family for updates worked well in the past, when dealing with acute issues. Not so much now. That caring bridge website seems to be working out for me.

I've also set up a weekly schedule for us. Well for me, really. It's got lots of flexibility into it, but also designated ME days, too. I'm struggling a little with the guilt, in that I'm not giving him my entire focus for every day, every minute. I tried doing that. He was happier, but my bitterness and resentment went overboard, and I had to pull back. Struggling too with his push back, his anger, over stuff like I'll sit outside in nice weather, rather than inside with him. He chooses to not go outside, so I'm trying to let him live with his choices.

I've point blank told his entire family that what he needs is contact from them. Visits if they can, calls if they can't. There was an uptick for about two weeks....and now, silence again from them all. Yet when a friend of his called recently, he refused to speak with him.