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Feb. 10th, 2011 11:28 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
gwynGot a call from the nurse in charge of Dad's care this morning -- they always start with "non-emergency" when they call me, but these days everything feels like an emergency. The other day, the boss of the social workers called me because I think she could tell that I wasn't getting communication from the one who's supposed to take care of Dad, and we had the big come to Jesus talk, which means I have to start moving my dad's stuff out of his apartment. This is a huge undertaking and one I can't really do on my own, and I told her I need resources for help. My cousin has volunteered to help to some degree, but with kids and a job, I can't see that happening enough to really help. And then there's the trip to Escapade.
Anyway, the nurse told me that he's been refusing to eat enough and drink enough water and they were at the point where they felt the need to talk about feeding tubes. I have his living will, so I said no, he doesn't want that, and then asked her the questions that are hard but have to be asked: if he isn't eating, but not getting fed, how long will it take for him to die? It's not like I want him to die, but it sounds like when I'm not there, he's just given up. They took him for a brain scan the other day, when I was there and he'd been alert and joking with the ambulance people and whatnot, and I thought maybe things were improving. But yesterday he was totally out of it, and I was trying to talk to him about the money issue.
Since they're discontinuing therapy, in another month, we have to start paying for the nursing home out of pocket, and there are about three years, tops, in his investments. This place is really pricey. I'm terrified, because I'm afraid of losing my own resources before Medicaid would kick in, and so far, up till this morning, I've been of the belief that he could linger this way for years and years. Since I make almost no money as a freelancer and Dad frequently has supported me in dry periods, I haven't been able to sleep and my stomach is in knots because of the money fears. The irony is that Dad worked his whole life so that me and my sister would never have to worry about anything, and that's what all his investing has been for. But I think he grossly overestimated his own ability to pay for years of nursing home care, and underestimated his longevity as a healthy person.
Right now I don't really know what to do. The nurse said it could be months like this, where he wastes away, and they give him palliative care. I'm OK with that, because I think that, were he present in his mind, that's what he'd want. He just tells them to leave him alone and there's only one person who can get him to eat at all, but if she's not there, "we're screwed," she said. The did find he has vascular dementia, so the fall and lying on the floor for hours pretty much tipped him into this territory. I think it's only getting worse as he lies there doing nothing. He's developed a bedsore, which terrifies me.
Tomorrow I have to go down and bring the living will with me, and figure out the next steps. I've been taking things out of the apartment slowly as I go, but he's a packrat, so there's way too much more for me to deal with in bursts. And on Monday, I have to meet my horrible hateful revolting cousin whom I can't stand and have him take some of the genealogy stuff and computer that he and Dad did all the time together. I can't abide him, and right now I really don't want to deal with him, but otherwise all that stuff goes in the recycling, which seems like a waste of his legacy.
I think the hardest thing about this is losing the last of my family. That I will be alone, and I won't have him to talk to or get advice from. That I have no one left in my life. I don't really know what the point of going on is when this happens. Keep enduring life for... what? I don't want him to suffer and I know that when he's lucid, he's in pain and unhappy, but I also don't want him to leave me alone.
Anyway, the nurse told me that he's been refusing to eat enough and drink enough water and they were at the point where they felt the need to talk about feeding tubes. I have his living will, so I said no, he doesn't want that, and then asked her the questions that are hard but have to be asked: if he isn't eating, but not getting fed, how long will it take for him to die? It's not like I want him to die, but it sounds like when I'm not there, he's just given up. They took him for a brain scan the other day, when I was there and he'd been alert and joking with the ambulance people and whatnot, and I thought maybe things were improving. But yesterday he was totally out of it, and I was trying to talk to him about the money issue.
Since they're discontinuing therapy, in another month, we have to start paying for the nursing home out of pocket, and there are about three years, tops, in his investments. This place is really pricey. I'm terrified, because I'm afraid of losing my own resources before Medicaid would kick in, and so far, up till this morning, I've been of the belief that he could linger this way for years and years. Since I make almost no money as a freelancer and Dad frequently has supported me in dry periods, I haven't been able to sleep and my stomach is in knots because of the money fears. The irony is that Dad worked his whole life so that me and my sister would never have to worry about anything, and that's what all his investing has been for. But I think he grossly overestimated his own ability to pay for years of nursing home care, and underestimated his longevity as a healthy person.
Right now I don't really know what to do. The nurse said it could be months like this, where he wastes away, and they give him palliative care. I'm OK with that, because I think that, were he present in his mind, that's what he'd want. He just tells them to leave him alone and there's only one person who can get him to eat at all, but if she's not there, "we're screwed," she said. The did find he has vascular dementia, so the fall and lying on the floor for hours pretty much tipped him into this territory. I think it's only getting worse as he lies there doing nothing. He's developed a bedsore, which terrifies me.
Tomorrow I have to go down and bring the living will with me, and figure out the next steps. I've been taking things out of the apartment slowly as I go, but he's a packrat, so there's way too much more for me to deal with in bursts. And on Monday, I have to meet my horrible hateful revolting cousin whom I can't stand and have him take some of the genealogy stuff and computer that he and Dad did all the time together. I can't abide him, and right now I really don't want to deal with him, but otherwise all that stuff goes in the recycling, which seems like a waste of his legacy.
I think the hardest thing about this is losing the last of my family. That I will be alone, and I won't have him to talk to or get advice from. That I have no one left in my life. I don't really know what the point of going on is when this happens. Keep enduring life for... what? I don't want him to suffer and I know that when he's lucid, he's in pain and unhappy, but I also don't want him to leave me alone.
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no subject
Date: 2011-02-10 08:20 pm (UTC)no subject
Date: 2011-02-10 08:31 pm (UTC)Do you have any local freinds who can help you with that? It's a heck of a thing to have to go through alone.