(no subject)

[gwyn]

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.

Comments

[kass]

Oh, honey, I am so sorry. It sounds like palliative care -- keeping him comfortable for however long it takes -- is what he wants, and I'm glad at least that he made that known to you so you don't have to guess about what he would want if he were up to making decisions right now. But I hear you about how hard this is.

I think the answer has to be that ultimately you keep on living for yourself -- for whatever pleasures you can find in this life; for connection with friends, for cons, for good vids, for enjoyable tv shows, for good books, for good meals or lattes or sunsets or whatever it is that you can find that will bring you joy. But I hear you about feeling left alone, and I can understand that feeling, and I am so sorry.

[dine]

I feel for you - I'm sorry you're facing such a hard, painful time on your own, and wish you weren't feeling so alone. even if you dislike your cousin, it's good to pass on the genealogy stuff - hopefully you won't have to spend much time with him in the process!

I hope your dad remaining time is painless, and that you're able to have at least a few more lucid periods. you're in my thoughts

[sakana17]

I don't have anything to offer but *hugs* and to let you know I'm thinking of you.

[fiercynn]

augh, I don't have anything useful to say but I'm so sorry you have to go through this. *hugs*

[elynross]

Massive, massive hugs. {{{you}}} I don't think I have any wisdom for you, except to say on good days, I think you have things to keep on for, if only for the kitties, and things you enjoy doing and watching, but I know it's hard to see positive things at a time like this.

One small practical note: would it be possible, once the cousin has taken care of the things he's taking, to have the bulk of it moved by a moving company into a storage unit? There would be the cost of it, but at that point it would be out of the apartment, and possibly then you could take your time going about it, at a much smaller cost than the full apartment. You wouldn't have to do all this right now.

[adair]

I'm so sorry you have to go through this alone. When my parents moved to a nursing home, and later when my dad died, I had two siblings who really carried the load. Take care of yourself first; that's important.

Now a couple of practical things. Did your dad give you medical or financial power of attorney? When he has lucid periods do you think he would? Both these would make doing what needs to be done much easier.
Also, ask around about lawyers who deal with Medicaid; there are rules about money, but knowing what would happen when the money gets low will help you. My parents went to the nursing home with about 80 thou in the bank. We did things like pay for funerals, buy headstones, things like that with the money while we had it - then paid it out to the nursing home. It lasted about 10 months for 2 people.

Take care of yourself.

[cereta]

I am so, so sorry you're dealing with this alone.

[klia]

It's a horrible situation, and I'm so sorry for both you and your dad. *hugs*

[umbo]

Such a tough situation--I send lots of *hugs*

[cesperanza]

*hugs you really hard* I think you're really brave. Like a real-life superhero-type person!

Argh.

[talking_sock]

I feel very bad for you, and I'm reading it all so carefully because I'm trying to learn from your experience here... I actually think you're doing an amazing coping job, and it's pretty instructive. I don't know what else to say, except "thinking of you."

[rainkatt]

Not here so much, so I just saw this. I'm so sorry you're having to deal with this. I have nothing to offer but hugs and good wishes that he not be in pain (or at least not perceive it). Hugs hugs.

[gwyn]

Yeah, it's weird, yesterday he was sitting up, talking, and super cheerful. I have no idea what's going on -- I feel like a yo-yo. It's more stressful this way than if he were just straight up dying.

Thanks so much for the card. ALthough I hated seeing that you're not going to be at Escapade. Wah!

[gwyn]

You know, my (good) cousin was really adamant about doing all the moving of stuff, and I was just freaking out, but yesterday I made the decision to go with this business that specializes in elderly transitions and work a lot with dad's retirement center. They say they can have him all moved out before I go to Escapade, so that I won't have to pay for another month's rent on the apartment AND the really expensive nursing home rent. So that will be good -- the next week and a half will be insane and monumentally stressful, but at least I have the knowledge that someone who knows all the rules will be taking care of it and cleaning the place up. I just have to get the finance stuff in the next few days and bring it all over here.

They're called Just Like Daughters. ;-) I figured you'd appreciate that -- I know you've gone through an awful lot of stuff like this yourself.

[gwyn]

Yeah, I have full DPA for him, and most of his financial accounts are set up so that I have signing privileges already -- I went to the bank with it, just to be safe, but they already had it on file. He's pretty good about that. But in the past couple years he's added a bunch of investments I don't know about, so now I have to sort through that when the mail comes in and figure out who to contact.

His main broker is waiting to hear from a colleague with the name and number of an attorney who specializes in this sort of thing, but I don't think it's going to happen before I leave for Escapade.

Re: Argh.

[gwyn]

Yeah, I have a bad feeling I will become a fount of knowledge about all this.

I guess depending on what happens, I wanted to take a real vacation this year. Not to a con. I was thinking that I've never been to the Northeast that high up -- actually considering Boston and environs. Who knows? I may come knocking at your door.

[elynross]

Oh, fantastic! I'm so glad there is a service like that. And we'll blow off some steam at Escapade....

[carbonel]

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*

[ann1962]

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::

[darthhellokitty.livejournal.com]

Wish I had help or advice. *hugs*

[cattraine.livejournal.com]

*Hugs* You are not alone.

[jackiekjono.livejournal.com]

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.

[unovis.livejournal.com]

Sympathy. I'm sorry you have to deal with so much alone.

[killabeez.livejournal.com]

Baybee, I'm sorry. And I was really serious about offering to help with the apartment. Really and for true.

[reginaspina.livejournal.com]

I'm so sorry that you and your father are going through this. I wish there were something I could say or do that would help you, but forever little it's worth, you have my utmost sympathy and I hope that you know how much you are valued by all the people that know you, so maybe that will help you feel not so much alone.

[thisisbone.livejournal.com]

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.

[gamiila.livejournal.com]

::hugs::

I know it's not much of a comfort, but we're all here for you.

[batwrangler.livejournal.com]

That's really rotten and I'm so sorry you are having to go through it.

*hugs*

[crickwooder.livejournal.com]

I'm so sorry you're having to go through all this.

hospice

[(Anonymous)]

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

[villeinage.livejournal.com]

I'm delurking to offer some of my experience working in nursing homes. A large part of my work now is specifically around issues of eating/not eating and end-of-life decision-making.

Please feel free to PM me.

Many older people stop eating and drinking as a natural part of the dying process, and horrid as it sounds, it can be a peaceful death, as long as there is pain relief and people don't start mucking around with IV's and such.

I absolutely concur with the recommendation for in-nursing-home hospice care.

Many nursing homes covertly discourage it since much of the reimbursement for care goes towards hospice and not to the nursing home itself.

People on hospice generally have a better quality of life and an easier death.

(Feeding tubes in the frail and demented elderly have been proven, time and time again, to generally NOT extend the length or quality of life. In this population, they do not prevent illness, help bedsores heal, prevent pneumonia etc.

They can be a godsend in a situation where someone is expected to make a good recovery, for children etc.

But the data for the frail elderly is just the opposite, unfortunately.)

I am so sorry that you are going through this. It's a hard thing.

[mackiemesser.livejournal.com]

I'm really, really sorry that this is happening.

[kirbyfest.livejournal.com]

I'm so sorry you're going through this. I wish there was something I could do to help.

[nagasvoice.livejournal.com]

Thirding this suggestion to check on availability of hospice care. I've seen coworkers going through this process with their parents.

[vagabondage.livejournal.com]

*hugs*

Sending massive thoughts of love and strength your way.

[kerithwyn.livejournal.com]

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.

[brynnmck.livejournal.com]

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.

[sdwolfpup.livejournal.com]

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*

[dualbunny.livejournal.com]

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::

[belmanoir.livejournal.com]

::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.

[black-bird-777.livejournal.com]

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...

[gwyn-r.livejournal.com]

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.