prog: (Default)
[personal profile] prog
Dad is halfway through a two-months-to-live prognosis handed to him quite frankly from a cancer center. He's being tended to daily by home hospice care, who are awesome. Amy and I met them by chance three weeks ago, when they were on the verge of calling Adult Protective Services because both my parents had stopped bathing or eating or changing their clothes or otherwise acknowledging external reality without outside assistance, and they had failed to volunteer that they had any children. But there I stood! And this is how I've come to inherit many troubles at the moment.

My parents' self-neglect is due less to despair and more due to dad being very sick and weak and mom sinking ever deeper into dementia, a condition that started to get serious when in winter 2011 they traded their big town-centric Fairfield apartment building for a drafty shack at the end of a dirt road in Oakland, miles from anything.

Why they did this is a mystery; I suspect that they got bilked by someone taking advantage of the fact that dad's energy level had finally dropped beneath the level required to keep mom's batty irrationality (a lifelong core personality trait) in check. I don't expect we'll ever quite know. But their moving into that awful space was the moment that their age -- over 80, by this time -- caught up with them.

Mom's mind began to drift in earnest, and is now permanently stuck in a state where, at best, she thinks they still own the apartment building and are just staying in the shack for a few days as a getaway. Or she thinks that they own all the other little summer shacks around the nearby lake, and refers to the people there as their tenants; there is a whole cast of other tenants she makes up stories about, sometimes involving noisy people who live on the second floor. (They do not have a second floor.)

At worst, she thinks dad is her stepfather and calls me for help to take her to a shelter for runaway girls. That was the state she was in the morning that we ran into the social workers by chance; my parents were hungry, dehydrated and filthy, which couldn't have helped. Mom wandered back into the present when I gave her some coffee, and we've since got folks to help with groceries and meal preparation and bathing and so on. APS is being kept at bay, but they're aware of the situation and prepared to intervene if we can't find a home-care situation that keeps my parents from being a danger to themselves and possibly to others. (Dad, weaker every day, keeps driving around, though he often falls down in the driveway and has to crawl back into the house. I'm not there to take the keys away. Ricky tried and got shouted down. The last time I visited, last week, mom locked the door while dad was outside and couldn't figure out how to unlock it; by chance I had the back door open. Neither of them are good at using their strange modern telephone, so one can't call them to check in.)

I'm paying for all this myself. I secured power of attorney last friday at an at-home meeting among my parents, a hospice social worker, and my parents' lawyer, who is also awesome. I am as I write this engaged full-time in trying to suss out their core financial information, then contacting various institutions and trying to convince them that I have authority to access all of my parents' stuff, and furthermore that time is of the essence -- I am trying my hardest to set mom up with the financial aid that will allow her to live in an assisted-living facility for the rest of her life the moment dad is gone, and there are only weeks-if-not-days left to do this. They are riding off my credit card for the nonce, and depending upon what I discover in their bank and credit-card accounts I might be able to reimburse myself, or even allow them to pay for their own care, but I'm not betting on much. But more to the point, a prerequisite to obtaining elder-care financial aid in Maine is knowledge of said elder's assets, and the lawyer knows exactly what legal-financial kung-fu to perform to tidy things up once I get those magic numbers.

The lawyer was very surprised and sad to hear of their rapid decline, starting with the ill-advised home sale, which was news to him. The last time he saw them, only a couple of years ago, they struck him as "young elders", to use his words. I would have agreed. They have fallen apart so fast since then, and I suppose that the undetected and untreated cancer sapping dad's strength, assertiveness, and ability to complement and counter mom's batshittery played a primary role here.

Ricky, disappointingly, presents another obstacle, one active as I write this. For years he's been frequently busing between his home in Bangor and my parents' place to help them out, a few days at a time, even though he and our mother get along with one another so poorly. (I didn't realize until Amy pointed out only yesterday that they possess very similar forms of crazy. By god, it's true, and no wonder they can't stand each other.) Dad would always give him rides to and from the bus station. But now dad can't drive very well any more, so when Ricky (due to a miscommunication) raced to the shack on Saturday, he found himself stuck there. He's not very good at communicating with the taxi service, and refuses rides from the home health-care folk in the house, whom he views with distrust. He also refuses my suggestion to solve two problems at once by driving dad's car to Bangor and keeping it there. (He asked mom if he could. She said no. So that's that.)

In the meantime, he's stuck in a one-room house with my mother, bored and angry. I received complaints yesterday that he's been frightening the home-care workers and even sending them home. (When I ask him about this, he blames mom.) I'm not sure what to do about this, especially given that even if I make the three-hour drive up to Oakland to give him the one-hour ride to Bangor -- which I am seriously, deliriously considering -- there's no practical way to prevent him from just busing back and getting stuck again the next time he feels it necessary.

I've apologized to the home-care folks for Ricky and they've insisted that I've nothing to apologize for, but his appearance is the latest in a one-thing-after-another litany of obstacles that keeps APS present, waiting to intervene and just take my parents away anyway. I've made in clear in writing that if the hospice decides that this last resort becomes the best option for all involved, then so be it.

I'm horrified at the thought of the funeral, mainly because I literally cannot imagine how mom will even manage to dress herself for it, let alone how she'll act at the actual service; she tells me over the phone that dad's got a real bad cold, you know, from the move, but he's getting better. Ricky's going to end up forever furious at me for not burying dad with full (expensive, tacky, and disrespectful) military honors, which Ricky's been insisting on, and I've been quietly ignoring. (Dad served in the Air Force for a few years as a kid, but it's not part of his identity or personality in any significant way, unlike Ricky's deeply self-ingrained army service.) Don't even ask me about Peter.

I'm not very close to my parents. I've only relatively recently come to compare notes with my grown-up friends and realize that my childhood-thorugh-young-adulthood was really quite fucked up in some fairly unique ways, and I have a lot of unpacking yet to do. That they are making all this difficult to the very last is really quite in character. (Don't tell me they can't help it. Dad is very much of sound mind, knows damn well what's going on, and still resisted giving me power of attorney, to say nothing of the idea of moving them out of the house and into a place that could actually care for them better.) I am not very sad that my father is dying, and that my mother rather is as well. I am upset in the sense that this is a process filled with one frustration after another, and carry self-loathing that I didn't do anything sooner, which could have made this much easier for everyone.

This leads to the question of why I choose to take up this burden, which has caused me to all but stop working for now, and almost certainly take up a large financial debt, and possibly miss a June vacation in Austin that I was quite looking forward to. I could just cut everyone off and let APS handle it, and that might still end up happening anyway. The answer, I think, is that I'm doing this for myself. I don't want to live out my own life feeling that I cruelly just cut off my parents undeservedly at the end, that I turned my back on them. I mean, here I am right? They couldn't have done that badly for me, and they deserve some attention back when they need it.

I'm interested in doing the right thing, and making sacrifices towards that. But I suppose too I ought to set an upper limit.



UPDATE: I very much appreciate and am touched by everyone's kind and understanding responses, here and elsewhere. Thank you.

Only a few hours after posting this the social worker told me that the home hospice attempt was all but ready to wave the white flag. Dad's strength is inexorably fading by the day, and with nobody dependable in the house at all times, the program just can't work. Home hospice assumes the round-the-clock presence of a family member who can do simple tasks and keep an eye on things, I learned. They initially thought mom could provide this role, and after a few days saw how that clearly wasn't true. Then Ricky volunteered, and that also fell apart quickly. The folks I hired to show up daily for a few hours don't cut it, since apparently they're not legally allowed to administer medicine. (A detail that strikes me as odd, as I type, but that's what she said, twice.) So it fell back to me, she said. Could I come over right away and stay in the house for a few days, while they looked for a hospital for dad?

This is when these thoughts of upper limits immediately applied themselves. I discussed it with Amy, and called the social worker back with a frank assessment that, as she probably has observed, ours is a dysfunctional family. I wanted to do right by my family and I wanted to see that the end of their lives came with peace and dignity, and having me stay in their shack with nothing to do but build up resentment and bitterness towards each other would be a rather poor way to achieve this goal.

And being an awesome professional, which she is, she understood exactly where I was going as soon as I started talking (but let me air it all out anyway), so we agreed on an alternative: I'm going to go on up to Waterville for a week, staying in a hotel that's only a few minutes away from their house, rather than a few hours, and will plan to drop in often, and otherwise be on-call, while the professionals continue to work things out. I'm going up tonight, accompanied (for a few days) by Amy. Enterprise Rent-A-Car, who is also awesome, gave me a nice rate on a nice car and said that I could just drop it at any Enterprise in Maineā€¦ so that provides an opportunity to commandeer dad's car out of danger, at least. (Among the things that Power of Attorney allows me, thankfully.)

Date: 2013-05-07 05:00 pm (UTC)
From: [identity profile] ruthling.livejournal.com
there is no part of this that doesn't suck. Put your own oxygen mask on first as the need comes.

Date: 2013-05-07 05:38 pm (UTC)
From: [identity profile] chanaleh.livejournal.com
Oh man. :-/ Hard stuff, all right.

Yes, an upper boundary is a VERY important concept.

But within that boundary, I do think you're right to continue handling the situation (taking on the burden) in a way that you feel best embodies your own value system. Which is a very different thing from doing it out of guilt.

Date: 2013-05-07 05:39 pm (UTC)
ext_87516: (530nm330Hz)
From: [identity profile] 530nm330hz.livejournal.com
Knowing that you will be able to look yourself in the mirror once they are gone is, as you have observed, so important.

Also, depending on what you mean by "military honors", they may not be expensive. (Tacky and disrespectful if his service wasn't important to him I can't disagree with, that's why we didn't have any at my father's funeral, but the option to have a flag-draped coffin and a "bugler" would have been paid for by the Veterans' Department if we'd wanted it.)

Take care of yourself.

Date: 2013-05-07 05:45 pm (UTC)
From: [identity profile] gemini6ice.livejournal.com
I'm glad you're putting fingers to keys, if this sharing is lessening the burden in any way. It is a big ball of suck, and, well, if there's anything you think of that we, your friends can do, please just mention it.

I still think you've taken action sooner and taken more action than most people would. I don't know how much it is to you to compare yourself to that bar, but I'm pretty sure you're above it (or below it, if it's a limbo-style bar).

The answer, I think, is that I'm doing this for myself.

And the reason doing this has value to you is because of your character and integrity.

Date: 2013-05-07 06:08 pm (UTC)
From: [identity profile] cthulhia.livejournal.com
set an upper limit. take care of yourself.

Date: 2013-05-07 06:18 pm (UTC)
From: [identity profile] radtea.livejournal.com
You're doing the right things for the right reasons, and part of doing the right things for the right reasons at times like this seems to involve feeling guilty/self-doubting/self-loathing as hell about it, so believe it or not it sounds like you're actually doing OK. Which sucks, but there it is.

Setting an upper limit is definitely a good thing to do, and it's likely your partner can help you a lot in talking through different scenarios and contingencies to define some objective thresholds and well-defined actions once you hit one of them.

Date: 2013-05-07 07:10 pm (UTC)
saxikath: (Default)
From: [personal profile] saxikath
Ah, hell. This sounds like a mess all round. I'm sorry you're having to deal with it. I agree with everyone else: you need to do what you need to do for your own sanity and sense of self, but setting upper limits is an important part of that too.

Is there anything we locals can do to help? I have family, friends, and coworkers who live in Maine, so if there's something you need that would require you schlepping up there that someone else could do, let me know and I'll see if I can find someone to help.

Date: 2013-05-07 07:24 pm (UTC)
From: [identity profile] michele bluhm (from livejournal.com)
Jason, Robert alerted me to your post. My heart goes out to you for having to deal with the rapidly deteriorating condition of both parents from different awful diseases at once, this compounded by complicating circumstances of which you just recently learned, not least the sale of their house and present living conditions. I'm glad hospice is there and that good legal help is pitching in. You are right; you'll be able to live with yourself after the worst is over in the knowledge that you did the honorable thing and were true to your own values.

Date: 2013-05-07 07:43 pm (UTC)
From: [identity profile] jtroutman.livejournal.com
That is indeed a giant ball of suck. I'm sorry you have to deal with it.

I think it is important to know your limits, and to also make a reasonable effort to do the right thing, for your own peace of mind.

You should not beat yourself up for not doing something before now -- they would not have let you, even if you had tried hard to convince them.

We are dealing with this with Sarah's parents now (who are 82 and 73). Her dad is still of reasonably sound mind and body, but he cannot handle driving more than about 30 minutes outside his local area (and only in the daytime), and there is a definite decrease in his mental ability. Sarah's step-mom is rapidly declining into Alzheimer's (essentially has no short term memory for anything that happened in the last 20 minutes, very forgetful of long term items) and has not really left the house in years. Their six children have collectively made several attempts over the last few years to convince them to relocate away from being in very rural coastal Maine (on Deer Isle) at the end of a 1/2 mile driveway. They have steadfastly refused to consider any other options such as an assisted living facility or even just a house closer to family. We believe that they will need real in-home visitation help before the year is over. No one has power of attorney, but at least there is a will and one of my brother-in-laws is the designated executor. At least in their case, they can afford to stay there and hire help, for a while.

If there is something I can do to help (being about an hour from Oakland), let me know.

Date: 2013-05-07 08:30 pm (UTC)
From: [identity profile] cortezopossum.livejournal.com
Having gone through some of this myself with my mother not long ago I can relate.

It's rough but it sounds like you're handling this about as well as anyone -- In a way I'm lucky it never came to it but my brother and I had to set an upper limit when dealing with mom's declining physical and mental health. She had a retirement pension that helped for a while but near the end costs for things like hospice and live-in care rapidly exceeded that.

All I can say here is stay strong and follow your conscious here.

Date: 2013-05-07 09:27 pm (UTC)
jazzfish: Jazz Fish: beret, sunglasses, saxophone (Jazz Fish)
From: [personal profile] jazzfish
Oh, jeez. :( That sounds horrendous. My sympathies. And agreeing with everyone else who's agreeing with the 'upper limit' idea.

Date: 2013-05-07 10:46 pm (UTC)
From: [identity profile] found-world.livejournal.com
I am very sorry these things are happening.

Date: 2013-05-07 11:36 pm (UTC)
From: [identity profile] ruthling.livejournal.com
Per the update, do you need someone to look in on your cat while you both are away?

Date: 2013-05-07 11:40 pm (UTC)
From: [identity profile] prog.livejournal.com
Oh... thanks, but Ada should be fine. Amy's planning to come back after a couple of days.

Date: 2013-05-07 11:36 pm (UTC)
From: [identity profile] keimel.livejournal.com
I have space in Sidney. I can help make it yours if needed. Alisa also has space in Sidney, I am SURE that she would be accommodating.

Email me if you think you need/want it.

Date: 2013-05-08 12:49 am (UTC)
From: [identity profile] taskboy3000.livejournal.com
My thoughts are with your family, Jason. It will get better, even if that does not look possible at all right now.

Date: 2013-05-08 01:39 am (UTC)
From: [identity profile] xartofnothingx.livejournal.com
alas i have nothing of importance to assist the situation, all i can say is i'm sorry you have to go through this and don't have any blood relatives to assist.

it's a crap situation. if there's anything you or amy can think of that i can do to help out, just let me know.

Date: 2013-05-08 05:27 pm (UTC)
From: [identity profile] hrafn.livejournal.com
Wow. This all sounds very rough. You have my best wishes for things going as smoothly as they can.

Date: 2013-05-09 01:41 am (UTC)
From: [identity profile] in-parentheses.livejournal.com
Just catching up on all of this. I have nothing to say, really, except that I'm so sorry. Nobody should have to deal with this. I wish you peace at the end of the process, anyway.

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