A relative has late-ish stage pulmonary fibrosis, needs oxygen in bed, and can’t walk around even with oxygen. He’s getting kicked out of the hospital because they can’t improve him, but he might live another year or two and doesn’t want to pay for hospice. I can’t imagine his wife dealing with all his needs (they’re both in their 70s) but I’ve no idea if there are programs that get him care without leaving his wife destitute. They have a fair nest egg and own their house, but he doesn’t want to ‘waste’ their money on health care. I kinda get it, but also: he needs care.

Anyone know of programs to look at? I’m looking for useful links, but I keep hitting things that either look scammy or like they won’t apply (example: if he is deemed ‘disabled’, doesn’t the govt. basically not care at all until you are broke?)

  •  jarfil   ( @jarfil@beehaw.org ) 
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    5 months ago

    pulmonary fibrosis, needs oxygen in bed, and can’t walk around even with oxygen

    I don’t want to be the bearer of bad news, but… my mom had a lung cancer, that left her with heavily compromised lung capacity. Around November 2022, she got kicked out of the hospital. Even though she could still walk without oxygen, we asked for oxygen for when she was in bed… which, this being Spain, was free. Still, the doctor signing the order laughed and said “What’s the point, she’s going to die soon anyway” (let’s say that pissed us “a bit” at the time). They gave her an oxygen concentrator, which she’d use in bed, while still being able to walk around a bit… and three months later, one night she passed away with it on.

    In your case, I’d say that if all he needs is oxygen, then get an oxygen concentrator, they’re like $1500 a pop. By all means try to rent one, or get one for free… and you might want a home assistant like an hour a day to help with hygiene… but the best you can do, is spend time with him, have him make a testament if he doesn’t have one, and arrange for funeral costs, then spend more time with him; that “year or two”, might as well be a “month or two”.

    •  memfree   ( @memfree@beehaw.org ) OP
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      35 months ago

      Thank you the delicate handling of the grim truth. We understand that he may die much sooner, but the part he worries about is the possibility of lingering so long that his wife is left with a pile of bills and no remaining funds. Whether home or in care, he will absolutely have oxygen.