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Kathleen83
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Member Since Nov 2011
Location: midwest
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Default Apr 09, 2024 at 08:14 AM
 
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?

__________________
Diagnosed:
Prolonged PTSD (civilian)
BPD
Dissociation

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