[If they are listening to you, you should not underestimate the amount of outside help your sister may need.]
Actually, I would never suggest to Hospice that 4-6 hrs of daily assistance would be sufficient, but I'm trying to get my BIL to agree to at least a few hours of care a day, and he's digging in his heels again. He has insisted on providing care entirely by himself for more than a year now, and I don't think he even realizes how exhausted and depressed he is and how minimal the care he was providing was. He has overridden Hospice and insisted on bringing my sister home from the nursing home without help and is supervising the search for a home healthcare provider himself, but as far as I know he has done nothing yet, so Hospice has set tomorrow as a deadline for making the arrangements. I told Hospice that I thought 12 hours a day at home would be best if it weren't possible to provide round-the-clock care at a skilled nursing facility. I agree that keeping her at home would be ideal, and I provided 24/hr agency care at home for my mother, who had Alzheimer's, for that very reason. I know my judgment here is very subjective; at our home, I was around my mother all the time, and the house is full of pets, light-filled, comfortable and tidy. My sister lives in a room far away from the rest of the family in a home that is dark, cluttered and awful, so my wish for her to be in a SNF was more in hopes that she would have more social interaction and a better environment elsewhere. You're right, though - she would want to be at home with her family, and I can only hope that they will pay more attention to her now that other people are looking in on them.
[I also echo Laurie's concern about potential problems with "proxy" care workers being there at the end and not fully understanding or appreciating the PALS' wishes.]
I have absolutely no legal standing here, so Hospice must work with my BIL in this matter, but they are dismayed, as am I, that he still insists on a full code. I think that's why they turned to me in the first place, but I'm powerless in this matter. Her husband claims that he spoke with my sister a few months ago and she insisted that she wanted all measures taken to preserve her life, but she has had dementia for more than a year and was not able to speak or communicate at all at the time, so I suspect he is projecting here. The sister that I know and love was an extraordinarily athletic, active, independent person and would never want to prolong her life under conditions like this. I think it would be the greatest kindness if she could just slip away, but that's not likely to happen. It's just a mess, and the saddest thing is that I suspect her husband may really go into a tailspin when this is finally over, because he just hasn't been able to come to terms with the inevitable outcome. I hope his kids will help to support him and give him a reason to keep going, but they are young themselves and will need emotional support as well.
