Hi SquarePegGuy, thanks for checking. Haven't been here for a minute because....I don't even know how to answer how I'm doing. Just when I thought I was finding my own balance, things went total FUBAR on me. Hubby's physically stable....mentally and emotionally all over the place. As am I, to be honest. Doesn't help that a lot of his talk and behavior now are flash points to a lot of my old issues, especially the PTSD stuff. Also didn't help that his medic alert pendant was taken away, because the company issuing it finally figured out (after I specifically informed them months ago) that he was under hospice care, so they had to disengage. Hospice provided a new pendant....which I told them wouldn't work (cellular network issues in this area) - and sure enough, it stopped working. Replacement not yet obtained.
Like the patient you visited, hubby is lucid and other than the obvious wasting away issue, is in relatively ok shape, but high risk of falls. When he does, he can't even roll himself over, let alone get back up. So without a medic alert pendant, I'm pretty much tied to the home now.
On top of this, an uncle who was previously hale and hearty suddenly declined, and is now entering hospice himself, with very little time left. My family being what it is, is imploding and the fighting has all ready commenced. So, being hundreds of miles away, and hubby, I can't go say my goodbyes to him, but with the battles going on amongst them all there, that isn't totally a bad thing. Just more, stuff, to choke down.
As for hospice facilities, yes. Hubby is in-home hospice, uncle is going to hospice facility. Hubby has option of going into hospice facility for a 5 day period, once or twice a month, for "respite break" for me. He adamantly refuses such things, and I don't want that either, no matter how much I might need it. I am absolutely livid with the hospice group he is with, do not trust them, - but am not changing them, because he likes them. And in the end, I feel it's his decision. As for me getting a break, he insists I can take off any time I want, for as long as I want, and he'll be fine (ha) or will get someone else to come stay with him. Since I don't trust them, turning his care over to them would not give me any emotional respite what so ever, so I don't see the point.
The only person in our lives who feasibly could come stay with him 24/7, for short periods, anyway, is his sister. She in fact DID come stay with him once for a week while I was gone, before he was in hospice. I'm not willing to go through that again. While she was here, was when he went into a sudden decline. No, I don't think she had anything to do with it, it was just circumstantial timing. The problem I have though, is that both of them concealed his decline from me, every time I checked in with them. Flat out lied to me about it. "Didn't want to bother you with it when you were busy and gone". Uhm, not acceptable. Especially since that decline was severe enough that it was what kicked him from palliative care to hospice care. So, I don't trust her anymore, either. Yeah, I know I have trust issues. But when people I DO manage to trust fail me, kinda hard to over come.
Sorry this is rambling all over the place, but I'm running on about 4 hours of sleep. And that was only obtained thanks to OTC sleeping pills. So, yeah. That's how I'm doing.