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Feb. 10th, 2011

Got 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.

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Feb. 10th, 2011 08:13 pm (UTC)
This is really hard stuff to deal with, and I don't have anything really useful to say, but I wanted you to know I'm reading and sympathizing (and hoping I don't end up in a similar situation with my parents). *hugs*
Feb. 10th, 2011 08:20 pm (UTC)
I'm truly sorry you are going through all this. Please take care of yourself too while you are taking care of all the other things. ::tight hugs::
Feb. 10th, 2011 08:20 pm (UTC)
Wish I had help or advice. *hugs*
Feb. 10th, 2011 08:31 pm (UTC)
I am so sorry. If I lived closer, I would help pack boxes. My mom and I have gotten quite good at that in the last year.

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.
Feb. 10th, 2011 08:25 pm (UTC)
*Hugs* You are not alone.
Feb. 10th, 2011 08:38 pm (UTC)
Sympathy. I'm sorry you have to deal with so much alone.
Feb. 10th, 2011 08:40 pm (UTC)
Baybee, I'm sorry. And I was really serious about offering to help with the apartment. Really and for true.
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Feb. 10th, 2011 09:19 pm (UTC)
This all sounds incredibly difficult. My dad is spending his investments on private in-home care so he doesn't have to give up his apartment and car (which the caregivers drive to take him to doctor's appointments, the store, etc). Since we're 400 miles away, we feel very grateful that he has the financial capability to extend his independent time this way. We all know a change will come, and we're not looking forward to that day, so I feel for you.
Feb. 10th, 2011 10:45 pm (UTC)

I know it's not much of a comfort, but we're all here for you.
Feb. 11th, 2011 12:25 am (UTC)
That's really rotten and I'm so sorry you are having to go through it.

Feb. 11th, 2011 01:12 am (UTC)
Have you looked in to hospice care I don't know what it is like in your state but where I live hospice can help you with a lot of the problems your talking about and a lot of people don't know you can get hospice in a nursing home. they really make sure your loved one gets the best care. Medicare pays for hospice and covers a lot of costs like meds and supplies for hospice patients. quality of life for hospice patients is much higher but most homes and doctors won't tell you about it.
on a side note feeding tubes are the nastiest things ever and I almost always try to talk my patients out of them
Feb. 11th, 2011 01:07 am (UTC)
I'm so sorry you're having to go through all this.
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Feb. 15th, 2011 07:51 pm (UTC)
I appreciate the comments, thank you. I did ask them about hospice and they do offer that service... the weird thing is that I went down yesterday and he was cheerful and chipper and sitting up, and he remembered my friend. I just have no freaking idea what's going on at this point, the constant up and down is really making me miserable. One minute he's at death's door, the next he's all Mr. Cheerful. They were doing something with his bed, I assume to help with the bedsores. (He's pretty out of touch with reality, but not completely.)

I just don't even know what to think anymore.
Feb. 11th, 2011 03:00 am (UTC)
I'm really, really sorry that this is happening.
Feb. 11th, 2011 03:37 am (UTC)
I'm so sorry you're going through this. I wish there was something I could do to help.
Feb. 11th, 2011 01:37 pm (UTC)

Sending massive thoughts of love and strength your way.
Feb. 11th, 2011 04:53 pm (UTC)
So very sorry you're going through this. I'm available for packing duties, if you need the help.

Don't forget to take care of yourself, too.
Feb. 11th, 2011 07:22 pm (UTC)
I wish I had something I could say that would help, but I know this is just an awful situation. I'm so sorry. You're very much in my thoughts, and if I can help at all, please let me know.
Feb. 11th, 2011 09:38 pm (UTC)
I'm so sorry you're having to go through this. I'm sending you all my love and good thoughts. Let me know if you want to meet up for some Puplet time in the next couple of weeks to take a (much deserved) mental break from all this. *massive hugs*
Feb. 12th, 2011 12:30 am (UTC)
I really wish I had something resembling advice or comfort for this kind of situation. All I have is massive sympathy and lots of internet hugs. Just remember we're here, and if nothing else we can listen. Sometimes all you can do when life gets this rough is to talk. ::lots and lots of hugs::
Feb. 12th, 2011 06:33 am (UTC)
::hugs:: I am so sorry, and I love you. <3

I have tomorrow (Saturday) off work. If you want to spend some time working on your dad's apartment together or doing something else useful (or not useful, whatever), I would be glad to.
Feb. 13th, 2011 01:38 am (UTC)
One thing you don't have to worry about is that Medicaid won't 'come after you' if his funds run out. He'll just go on Medicaid, you won't be forced to pay. But you still need to see that attorney...
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