2014-07-28 11:56 pm

test

Hello.

2014-06-05 03:37 am

(no subject)

Peter got his apartment, in part because I co-signed the lease. I may not have realized exactly what I was getting into. I have a better idea now. Even so, I'm not sure I would have made any other decision; it was that or the homeless shelter, for him. We found a perfectly good little place on Craigslist. I liked the landlord.

In the time since he has proven to be completely unmotivated to find any way to look after himself financially. His efforts are desultory, at best. I wrote him a letter on paper with advice about taking his iPad to the library and using their Wi-Fi to browse Craigslist, which has a wealth of Bangor-area jobs he could do. He apparently went to the library once, was told that the lady who could help him wasn't at her desk, so he returned home and didn't try again.

Last week he had, with the help of his social worker, lined up an interview for a roadside flagging job. When I called him the next day to ask how it went: "Well, I have to take medication, you know, and it gives me cottonmouth. So I need to be drinking water all the time, and that means I have to go to the bathroom like every hour or two. And I knew they wouldn't like that." So, he didn't even bother trying.

He can't apply to the Circle-K because it requires math, and he can't do math. He can't apply at the Wal-Mart because the in-store application computer confused him. The security companies he interviewed with two months ago and felt great about haven't called him back, and my efforts to coax him to follow up haven't yielded much. He continues to flat-out refuse to even consider looking for work in either food service or mental-health assistance, the only fields he has any significant experience in. (He claims burnout.)

His wife, who lay in hospice during the move, died just days after I returned home, five weeks ago now. Being able to say "Look, my wife just died" sure is a potent thing to throw onto the table when someone who cares about you if pressing you to do something with yourself. It never fails to get me to back off, and I'm sure it has a similar effect with others in his life, too. I get the feeling he's going to keep reaching for that for some time.

I may have made a mistake with the co-signing. I have implied that I won't be able to pay his rent after two more months -- at least not using some surplus cash from mom's checking account -- but have stopped short of saying that I absolutely won't pay, since have in fact legally bound myself to cover his rent through April of next year, whenever he fails to pay. I'm grimly assuming that I'll need to.

Ricky texts me that I should be sending Peter more money. He says it's the humane thing to do. I begin to think the more humane thing to do would be to cut him off completely, insofar as I'm legally able, and force him to help himself.

I do have another lever. I've been paying for the car Ricky and Peter have been using ever since the festivities began, last year. The car and the Oakland house together hoover around $1,200 per month from my pocket. (This is before adding in Peter's rent.)

I intend to get rid of the house this year, one way or another. I was going to not think about the car until that was settled. But now, gosh. I wonder what motivation Peter might discover were I to announce that I intended to stop paying for the car past October.
2014-04-29 12:50 pm

A letter to my brother's social worker

Hi Jon,

As Peter (tells me he) told you, I found him an apartment in Bangor yesterday. His brothers expect to help move him into it tomorrow (Wednesday, April 30). I put my own name forward as the guarantor of his rent, in order to help push the application through, given his unemployment.

On that note, I would like to please ask your assistance as his social worker in helping him recognize the severity of his need for immediate employment. I realize that you might need to transfer his case to another social worker soon, given his relocation from Old Town to Bangor, in which case I invite you to share this communication with whomever shall be receiving him.

I find his attitude towards work at once very determined and rather resistant. Much as he didn’t quite understand how desperately he needed housing (and how damaging being functionally homeless, even for a little while, would have been), I found yesterday, as we visited both the Bangor Career Center and the Manpower office downtown, that he doesn’t quite understand that he’s not really in a position to be choosy about work. As of yesterday, he voiced unwillingness to consider any work beyond being a driver or a security guard -- something he has only one year of experience in, and that year happened more than 20 years ago.

He continues to insist, in particular, that he wants nothing to do with caregiving, even though that’s where (outside of a few years working in a hotel kitchen) the entire remainder of his practical work experience lies. (He doesn’t want to work in a kitchen, either.) When the career center counselor we spoke with, having heard his narrow list of preferred jobs, asked if he’d like a job starting immediately that involved pouring concrete, Peter looked horrified — but he still didn’t make the connection that his choices probably come down to (a) doing what he knows how to do, or (b) unskilled labor.

Relatedly, I’ve observed over the last month that he honestly doesn’t seem to understand the difference between a job interview and a job offer. When he had a positive interview experience with the security company, he described it to me as if he had landed the job and would begin work within a few days. I don’t mean to imply that he deceived me, here; I think that he actually believed this to be the case, and that his lack of experience in “the real world” (despite his age) led him astray.

(Here is a short background primer on Peter: even though he’s 16 years older than me, I still feel like we grew up together because he hung around the house doing nothing in particular for the larger part of his young adulthood, with our parents supporting him. I don’t recall him getting a job prior to his late 20s, and he has had only a few jobs since then — albeit one of these, working in the home for autistic adults, lasted many years.)

I lack the resources to support his new $650 rent beyond this month. It is imperative that he lands and commences at a regular job, at the very least a part-time one, in May. I need to go back home soon, and I therefore must ask the assistance of those tasked with helping him professionally to please focus on this need of his.
2014-04-29 12:50 pm

Between August and April

If I may summarize the last eight months or so, as regards my mother:

Calling around among web resources for senior care in Bangor, I made a contact in late August with someone at EMHS (http://www.emhs.org), who very kindly agreed to act as an advocate for my mother's case. She did some magic, and suddenly my mother had an appointment lined up with a geriatric-psychology specialist at Acadia Hospital.

The next six weeks proved very busy for me, in this regard. All these things occurred, and not necessarily in this order:

• I traveled a lot between Boston and Bangor. I stopped using rental cars, instead riding a Concord bus between the cities, and commandeering the family SUV (the existence of which is a story unto itself, and for another time) while in Bangor.

• It took the psychologist about 20 minutes of conversation with her to conclude that Dorothy had Alzheimer's, stating that he didn't feel a brain-scan was necessary. I agreed. This began a regimen of monthly appointments which she continues through today; while I oversaw her first few, Ricky has been accompanying her since October.

• I did apply for the veterans' pension, and then immediately acted to disregard it. Its total amount is a pittance, especially when held against my mother's monthly cost of care, and beyond that I was told it would take a year to process. The work had been completed, so we sent it along, but then I moved on to seek other help.

• I admitted to my mother's lawyer, John Nale of Waterville, that I had chosen poorly in not seeking MaineCare -- Maine-branded Medicaid, essentially -- sooner, initially thinking it a waste of time and effort; I'd last examined it while my father was still alive, and the stresses were different then. I paid him the flat fee his office requested to take care of all my mother's legal needs for the rest of her life -- an amount that conveniently matched the remainder of her bank account, after dad's life-insurance payout -- and by god the Nale Law office flew into action.

I worked with a paralegal who stuck to my mother's case for months. I set up a shared Dropbox and stuffed it with all the documentation she requested, which took me weeks of full-time work and research, She transformed this into a petition to MaineCare, which she pushed at until it went through -- and then she kept pushing until it retroactively applied itself to cover the whole winter.

• I spent a week in Bangor at the end of September to pursue a number of errands, including winterizing the house (which, yes, did not sell during 2013). Given my change in direction regarding MaineCare, I spent some time rolling around looking at the handful of secure Alzheimer's facilities that accept MaineCare. In a bout of astounding luck, I found a one named Woodlands Senior Living of Brewer that not only was an honestly beautiful space -- they were happy to give me a tour -- but it had a room available. I called or visited other places that were gross and depressing, or full-up, or didn't accept MaineCare. To find a single case that met all three criteria (or avoided all three anti-criteria, I suppose) seemed miraculous. I immediately started to apply for my mother's residence at Woodlands.

The next day, Winterberry busted my mom for running away again. When they called to tell me that they'd checked her into a hospital and needed my advice on what to do next with her, I said "You have called at an interesting time." We arranged to transfer her from the hospital into the Alzheimer's facility, and it all worked. This was hair-whiteningly expensive for a short time -- private-pay rent there is nearly $8,000 per month -- but MaineCare kicked in presently.

And after all that I took the winter off, more or less. I dove back into work, and just swallowed the $1,200 / month in additional costs that maintaining the house and the car cost, figuring that when the snow melted I'd get back to work on getting rid of that stuff.

So that brings us to now. I am moved to update this journal, which has effectively become the journal of the period of my life I sometimes call "The Troubles" and sometimes call "The Festivities", because I am sitting on a bed in the Bangor Howard Johnson's hotel for the first time in six months. We're having an open house this coming weekend, and I feel hopeful about that, but that's not why I'm here.

I'm here because I had to bail out Peter, my middle-brother, who needed a lot of intense help in finding an apartment. He has to move immediately because he lost the qualification that allowed him to live in the low-income housing facility he and his wife have occupied for the last 12 years, because his wife recently moved out, into hospice care. Peter quit working over two years ago to care for his invalid wife full-time, sharing her disability income between them -- but tragically that source will end soon, and his legal ability to continue living in that apartment ends on May 1. Crushed at losing his wife, he vaguely planned on becoming homeless.

So I got back on the bus and found him an apartment yesterday; Ricky's gonna help him move into it tomorrow. And now I have to help him find a job in May so that he can start paying his rent by himself. I will share the letter I wrote to his social worker in my next post.
2013-08-18 05:47 pm

Latest with mom

Following from the last post in this thread…

Mom still lives at Winterberry. As a stopgap measure I've hired an in-home care service to spend a few hours with her every day. I started this immediately after the previous post, and Winterberry took pains to let me know how this turned her mood around immediately. We started with 12 hours a day, which I quickly turned down to six. Then I lowered this to four, but after a bad episode I rolled it back to six again.

I have to play with this knob because my mother's monthly expenses, with six daily hours of this care, top $9,000. With no in-home visits at all, it drops to around $5,500. Either way, her monthly income is around $2,000. I have a small pool of life-insurance payout money from dad, but that is dwindling very rapidly and will be gone by Halloween at the current rate of expenditure. When I first received that payout money unexpectedly it seemed a miracle, and while I'm still happy it exists, the wool's only recently been pulled from my eyes how horrifically expensive mom's current upkeep is, leaving me quite alarmed. Needless to say, there's no way I can afford to pay several thousand dollars per month out of pocket to support my mother indefinitely; the range matches or exceeds my average gross monthly income as a freelancer.

Selling the house becomes a top-priority project. That will immediately lower monthly expenses by more than $2,000, as well as provide a nice bit of cash for further cushioning (but not anything that will last for more than a year, at her current spending rate). Over the next few days I hope to sell the house's contents to an antiques auctioneer, who -- entirely cognizant of the fact he's doing me a favor -- is likely to offer a very token amount, plus the labor of packing it all up and moving it all away. With that done, we hope that the real estate agent I've hired ail have more success than she's found so far in moving the property along.

I also plan on taking mom to see her doctor in Waterville, so that the doctor can fill out a form from the Veteran's Administration confirming that mom cannot take care of herself. This is the final document from a long list I've been collecting since early June; on Friday I'm meeting with an agent of the VA in Bangor to talk about setting mom up with a pension, something she probably qualifies for based on dad's brief but on-record wartime service (Korea). I'm pinning a lot of hope on this pension, but I don't yet know how much it will cover, or how long it will take to activate. I've been warned that it can take as long as a year in some cases. I hope to have at least some of these unknowns resolved by this time next week.

While my last visit with my mother in June was perfectly pleasant, I'm not at all looking forward to this one. Over the last few days her mood has deteriorated quite a bit. Lately she becomes unhappy as soon as her "friend" from the in-home place leaves in the early afternoon, and spends the rest of the day resuming her campaign from Sunbury Village of calling phone numbers she finds among her things. Lately this is me or my brothers, but in the past this has included more distant family, or her doctor, or random professionals that dad did business with in the past. She'll tell them that she awoke to find herself alone in an unknown location full of strangers, some sort of hotel, but she doesn't have any money. Everyone's been very nice to her so far, but she doesn't have any way to pay for anything, and she fears she surely will be kicked out soon. She pleads with whoever she's called to contact her family and tell them she's in trouble.

I briefly had her phone disconnected, in part to stop bullying calls from her late husband's many creditors, which would always upset and confuse her. But this just made things worse, with her harassing the house staff or her neighbors to use their phone so that she could make her calls. So I've changed her number and her her phone reconnected.

When she does get me on the phone, she always begins "Oh, thank god," because as far as she's concerned this is the first time she's spoken to anyone she knows since her time in the strange place began (which she perceives as three or four days ago, invariably). When I say that I can't pick her up to bring her back to her real home, she heaps abuse on me, somewhat in the mode of a petulant teenager. I have done nothing for her; I am treating her like an animal. She knows she has memory problems, but why am I not treating them myself at her own home, instead of dropping her off in a strange place? She doesn't need me, she says, and if I won't help her then she'll just run away and hitchhike to Florida and start over by herself. She wishes sincerely that I am ignored and neglected just as badly when I get to be her age.

Then she tries to hang up, by pressing buttons randomly on whichever phone she found, so I end up being the the one to actually break the connection.

Mom's been on the waiting list to receive a geriatric psychological examination from Bangor's Acadia hospital for nearly two months. The receptionist of the doctor there has advised me to go ahead and check mom in to either of two local hospital's emergency rooms for an emergency geri-psych screening, which might have the same outcome as a scheduled one. I've told Winterberry that they can go ahead and do this at their own judgment, should things ever get out of hand again.

Either way, I want the outcome of the screening to be prescriptions for lots of psychoactive meds so that she'll be numb and happy-ish for the rest of her life. I have been more frank about this, in recent communication with them.

And that's awful.
2013-06-26 12:29 pm

(no subject)

I got the official call from Winterberry Heights that they can no longer handle mom this morning. Unlike Sunbury, they're being very professional in their language choice about recent incidents, but her "elopement" attempts -- scooting out the door and down the street at every opportunity -- are unceasing, even with new medication, and she's now started to smash windows (both hers and her neighbors') in an attempt to escape and go "home", wherever that might be.

She's fine so long as someone is with her. But the staff now feels that they literally cannot turn their back on her, and they have expressed their unhappiness about this to me. I can understand that.

Winterberry is being much more helpful than Sunbury was, assisting me with finding interim solutions and possible next facilities. I am also making some calls myself. This will be the third facility she'll have lived in in a single month. I will ask them "Is there any situation at all where you might call me to say that she can't stay?" I will avoid the temptation to say "If it were socially and legally acceptable for me to gently set her adrift on an ice floe…"

This is not a good day to have job phone interviews, but I have two anyway, and a long on-site one Friday. I might just shut off my phone for that one.
2013-06-08 01:04 pm

(no subject)

I got the official call from Sunbury Village that they could no longer handle mom on Tuesday morning; the word "ridiculous" was deployed on their end to describe her shenanigans, which had gotten to the point of other dementia-afflicted residents calling the office to say that the lady from 335 was in their kitchen again. I remote-directed Ricky and Peter to move her to Winterberry on Thursday. Winterberry is Sunbury's neighbor, and provides more active assisted-living and memory-care services for more far-gone oldsters. (They used to be the same facility, and I have to imagine that the respective naming is intentional.) Apparently she gave them a grand send-off by shuffling around the building pulling emergency alarms before being escorted into the new place.

I have done my best to build on past experience and provide complete transparency to Winterberry about mother, her backstory, her behavioral problems, and Ricky's involvement. I described how mom's dementia and Ricky's disorders were a volatile mix, which resulted in bizarre scenes that would surprise and alarm Sunbury's staff. The Winterberry staff I've been speaking with have all been bullish about working with mom, even given all this information. So was Sunbury, though, until literally days before they said it wasn't working out.

Mom's current pattern is to be of sunny and happy disposition to everyone who speaks with her, but she will quickly insist that it's been a nice visit but she's got to get back to work now. Or back home, or to the bank, or some other urgent errand. She's very nervous by the fact that she doesn't have any cash or identification, because she doesn't know how she's going to eat, or pay for gas, or get cat food. She waves away my explanations by telephone that she has three big meals a day there, and that Ricky can run all the cat-food-related errands she needs filled. It makes no sense to her at all that she actually *lives* there; she figures she's in some ill-defined in-between place (which to her credit I suppose in true on some levels), and gets exasperated with everyone's stubborn refusal to just take her back home, already.

Winterberry told me yesterday that they've had to redirect her back into the building several times, which she cheerfully complies with until she gets nervous again. They're much more patient and willing to help with this than Sunbury was (for lo they charge double the rent as Sunbury), and the Ambien at least prevents her from trying to do this in the middle of the night. But this can't last; if she doesn't acclimate (through time, medication, or other route) over June, then this solution too will fail, and we'll have to place her into a "memory unit", which is essentially a lockdown facility. (Winterberry has one, and it has a waiting list attached. I would expect this to therefore be the case with any others.)

Meanwhile, Sunbury management, who had been goodcop-badcopping me about mom's behavior since we moved in, currently claims that Aha! She failed to give 30 days written notice before moving out, and therefore owes rent in full through July! I don't intend to pay them past June, because for fuck's sake, but I have not had the wherewithal to begin this conversation with them yet. Part of me rather feels like I've had a cash-firehose tuned on mom for the past six weeks, so what's another $2,000? Yesterday Amy pointed out a $17 discrepancy on our hotel bill and I wanted to laugh but we fixed it anyway. Living like a rich man.

Picked up many nice job leads. Have not applied to any because time.

Returning to Maine next week for at least one day; taking mom to doctor, and hoping that my personal presence will increase the likelihood of immediate prescriptions for Winterberry's recommended anti-anxiety medications for her. Then setting up a new PCP in Bangor, an act that apparently can only be done in person.

I hope this all works.
2013-06-03 12:12 pm

(no subject)

Mom's taken her Ambien two nights in a row, so that's two quiet nights. Well, we can't have that, can we! So she's switched tactics to decide that I'm stealing all her money and spending it on myself (how else could I have afforded a trip to Austin?) and is now bothering the Sunbury staff with demands that they cancel her lease so that she can move "back home".

The conference started two hours ago, I am led to understand.
2013-06-01 07:59 pm

(no subject)

There's no other way to put it: Mother is actively sabotaging all my attempts to help her. After two days of effort I got her checked back into Sunbury with an Ambien prescription that would get her through her nighttime confusion, glued to my phone as I coordinated nurse, doctor, brother, caretaker and building manager to set everything up. Total victory, right? End of story?

No! Because she refuses to take the pill! And of course she scared another resident at 3 AM last night by pounding on his apartment door while sundowning and out of her mind, the sort of thing she will keep doing every night until they finally toss her out.

I call her up to tell her I hear that she's been having trouble at night lately. Those people are trying to set me up! she says. I tell that her some guy said she wandered into his room. No, she insists, it was he who wandered into her room, and he turned the story around and got the whole building to believe him, and I guess I believe him too and not my own mother. Don't I know that she just lost her husband? How dare I. Forget it, she says, she's done with this place. She's going back home.

Enough. I am not pursuing this path any further. Barring a miracle, mom's not going to live an Sunbury past this month. That's four large down the crapper but whatever; call it money spent on learning just how messed up she is. (Plus the hospital bills, which are of an as-yet unrevealed amount.)

I need to move her into a more secure assisted-living center. There's one next door, and for five thousand more bucks we can gamble with that for a month. That is looking like the most attractive option right now, even though it means accepting a loan (and one that has already been offered) to accomplish.

I'm going to have to get a full-time job to help pay for this; this is beyond what freelancing can pay for, at least until I get other financial helpers set up. I will, for example, sell their house, but that isn't going to happen overnight. But nothing can get done while mom's still in flux, and that includes me working on anything. I could not even start a job so long as I'm still getting woken up daily by we-had-another-incident-with-your-mother calls, each one requiring a full day on the phone dealing with fallout.

I'm in Austin now for a Perl conference, allegedly. Christ.
2013-05-27 05:10 pm

On the train

Sticking to Plan A: Riding the Downeaster to Brunswick, then Zipcar to Augusta. It's a nice break from the three-to-four-hour drive from Somerville. We have hotel and transportation plans booked only to cover tomorrow morning's funeral, followed by the gathering that my Aunt Jan would like to hold at a nearby hotel, plus miscellaneous day business in central Maine.

I packed several days' extra clothes, just in case I need to stay longer. Should that happen, Amy will make her way back home alone and I'll proceed to wing it, as I have been much of this month, and as I had hoped I was done with last weekend. I don't know at this time of any sure reason I'll need to do this, but I know very little right now.

It's nearly 5 PM as I sit on the train (which hello just started moving) and I still haven't heard from the hospital since our conversation this morning. And as such I have no logistics to figure out about whether or how we're going to get mom to the funeral, and nothing to pass along to Ricky. I wish I wasn't dependent upon him for this, except that I must pick up dad's urn from the funeral home just as it opens, only 60 minutes before the service starts, and then proceed directly to the cemetery. Peter trashed the car I dollar-sold him a while ago. Ricky's her only ride.

Let me tell you, every new professional meeting mom for the first time is very impressed with how deeply, deeply fucked this all is, especially since their first reaction is to invariably be charmed at this sweet old lady who loves to talk and make friends, even when the sun's down and she's off her rocker. I console myself with the fact that in less than 18 hours dad will be in the ground no matter what and so one variable will have played itself out.

Resolution: Mom's health is more important than her attendance at a ceremony. Furthermore, our hope that attending the funeral would ground her in reality is based on out-of-date information; I have reason to believe that her dementia may have causes wider and more serious than grief for her husband. Therefore, unless I am told otherwise by the medical professionals caring for her, I'm going to assume that she won't be able to attend tomorrow morning.
2013-05-27 11:08 am

(no subject)

Word of the day: Sundowning. http://en.wikipedia.org/wiki/Sundowning

Had a frank conversation in the light of day with the management at Sunbury. (Last night's incident all went down between 10 PM and 2 AM. Information was… incomplete, at best.) With luck she'll have a proper psychiatric screening and a route to treatment this week. With a lot of luck she'll be able to move back into Sunbury and settle there, with the help of knowledge and medication. I don't know how much more luck is in the bucket right now.

Even though during the day she's more lucid in phone calls than she has been in years, at night she wanders the halls in utter confusion, unaware of where she is or why. She asks where her husband is, and wonders why she brought the cat into a strange vacation home with her. She never recognizes any of the caregivers, managers or neighbors she's been seeing every day for over a week now, though she acts friendly towards all.

Last night she was discovered by another resident sitting in the hallway with her head bloodied, telling a story about chasing her cat around the building. She didn't know where her apartment was, though her door was just yards away and wide open. Her bedroom contained some knocked-over furniture, and more blood. The cat was sitting on the bed (and I'm told it never leaves her apartment anyway).

"I don't think this is going to work out," the manager told me.

They'll let her check back in after the hospital's done with her, and they say they've had other residents with rough starts who managed to settle, with help. But in her current condition, she can't stay. The hospital's set her up with a busy day today of evaluation, so all I can do is wait to hear more. I've asked the home's caregivers to make sure the cat's bowls are full.

I've told the hospital about the complicating factor of tomorrow's funeral (90 minutes away from her current location -- actually closer to two hours, at the speed that Ricky drives), but made it clear that her health comes before ceremony. We will make a separate trip to visit dad's grave later with her, if we have to. It's too late to reschedule the funeral at this point. Frankly I have to wonder if this injury is self-inflicted somehow; she's been insisting for days (when the sun is up) that she doesn't want to go.

They are aware of the complicating factor of my great distance. I have yet to tell them of the complicating factor of Ricky. Or to tell Ricky about any of this, but I have to, lest he try to visit the home and find out that way. I'll call him now.

I'm going to have to tell clients that I'm getting literally zero work done in May, and I really don't know when I'll be able to return. I still hope to go to Austin for a Perl conference next week.
2013-05-27 09:02 am

(no subject)

Mom fell in her apt last night and got two minor cuts on her head; went to hospital. Doctor subsequently alarmed at the level of dementia she showed, and relayed to me that the retirement home manager he spoke with essentially said "She's with you? Awesome. Don't bring her back." So she stayed at the hospital overnight.

Doctor let me speak with her in an attempt to get her to calm down. She wanted to know why I spent so much time helping other people, but when it came to my own mother, I just completely ignored her?

She may or may not be literally homeless now. I'm not calling anyone until I finish drinking this coffee.

Dad's funeral is tomorrow.
2013-05-24 03:31 pm

Things have been better, part 2.

Moved mom into a retirement facility called Sunbury Village last Saturday. Almost daily since then I have received concerned phone calls or emails about her. Nobody's said the words yet, but I'm getting afraid that they're going to tell me soon that she's just not a good fit for that place, and needs to be moved elsewhere. Finding this place, friendly and affordable and pet-friendly, felt like a miracle; losing it would feel like just another goddamn thing on the pile.

Late night and early morning are the worst times for mom. She's wandered into other residents' rooms, and she frequently says she's looking for her husband. (If corrected, she'll insist that it's her father who recently died.) Their true fear is that she'll wander right off the premises; they're not an alzheimer's facility, so they have no fences or other defenses against that. If they feel that this behavior is imminent, that will be the end of that. There is an alzeimer's-friendly facility literally next door, but its monthly rent is nearly twice as much.

I've caught up quite a bit with the state of mom's finances, and have tracked down her health insurance information and her physician. I've started a conversation about getting her a proper mental-health diagnosis, something she's never had. This is not a thing that's going to happen overnight.

Ricky, who lives a short drive from the home, is very active at helping mom, and because I live four hours away by car, he's basically the agent on the ground. However, he is very hard to steer, and sometimes he feels to me like a loose cannon. Despite my repeated requests to not do it, he's repeatedly taken mom out of the building on day-long errands to do one thing or another. Yesterday he got her a driver's license, a birth certificate copy, and a prepaid cell phone. Today she's off to get a perm, because she needs a perm for the funeral because he said so.

Ricky gets irritable quickly in conversation with me, and the staff have complained to me that he is "stand-offish" to them when they try to give him advice; their stance, as a result, has just been to leave him alone. For his part he tells me that the caregivers' critiques are "bullshit", and generally sees them as obstacles to his care for mom. I get him to agree that mom needs stability and routine and space so that the caregivers in the home can get her settled, and then the next day he borrows her for another five hours.

I've lost my temper at him once over the phone, roaring at him to shut up at a wake-the-neighbors volume of voice.

I haven't been able to work since late April. I work for myself, so this means zero income for me. My credit card is around half-full from our adventures so far. I live four hours away from mom's residence; the many people I speak with are invariably disappointed that the only responsible family member lives so far away.

We still haven't buried dad.
2013-05-16 02:02 pm

Status update

Here is an obituary I wrote: http://blog.jmac.org/blog/2013/05/16/an-obituary/

What follows is some stuff I typed into a chatroom today. I'm still in the same hour-by-hour crisis I've been in since Monday of last week. I'm in a coffee shop in Waterville as I type this with no clear idea where I'm sleeping tonight.

Things are dire here; nothing is stable until mom is safe in a home. I keep thinking they're stable and then something else blows up. (It's ricky half the time.)
I am shifting my stance to getting her moved the hell out and damn the cost.
I'll figure out how to pay for it later.

Today Ricky decided he doesn't want to drive the car anymore because he isn't insured. "I'll get arrested and go to jail!"

Yesterday it was the plumbing. Tomorrow it'll be Ricky's missed the bus or some other damn thing.

I feel better for having come to this decision

More background: I was under the misimpression that getting mom into a home on the dole would be a matter of waiting a few days for forms to process. This is true except for the "a few days" part.

I'm now being told this may take weeks or more to find a bed in a facility that accepts MaineCare (as opposed to private pay)

And I'm in continual crisis mode until mom's moved. Which is a huge drain on my money, my psyche, and my relationship hi amy.

So I can't stay in this mode; i was hoping as recently as this morning that we could tread water with ricky's help but that's a fantasy

also I straight-up can't work, or do anything else
except take care of a crazy old woman who literally cannot appreciate it
that's kind of a shit trade, for me
2013-05-11 12:25 pm

(no subject)

Here's what happened this week, starting from the night that dad's social worker summoned me to Waterville.

We're navigating the crisis, and I hope that its endpoint is in sight, but it's uncertain. This is the sort of work where the horizon is an arm's length away; only at the end did I realize did an end-condition resolve at all, and I'm grateful for that much.

Read more... )
2013-05-07 12:55 pm

Things have been better.

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 Maine… 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.)
2012-11-19 12:25 am

Why (some) zombie media turns me into a scary jerk

Amy and I were browsing film trailers on the AppleTV when we happened into the one for World War Z, and I started to act squirrelly, biting my knuckle unconsciously. When she stopped the trailer and looked over at me, I angrily snapped at her to bring it back. "No," she said, and shut off the TV. And thus did zombies spoil another evening in our house.

I've been open about my distaste for zombie fiction and its mainstream popularity for some time. I've usually expressed it as boredom at this trope in particular, or disgust at most fantasies about human civilization ending in general. But I have avoided examining the fact that sometimes it makes me furious, zero-to-sixty, like a demonic possession. After this evening's incident, and after the apologies, I resolved to work out where that came from. I came to an answer surprisingly quickly, and I want to get this into writing.

This problem only arises with passive visual media that involve "fast zombies" -- the more athletic, sprinting and snarling variety that have enjoyed prominence since 28 Days Later, versus the lurching, moaning creatures of older pictures like Night of the Living Dead. Twenty-first-century zombies are less like animated corpses and more like living people so completely consumed with rage that all they can do is run around screaming wordlessly, clawing and biting at everything they see.

And the root of the problem is that there is a tiny but undeniable part of me that completely identifies and sympathizes with these zombies. It sees an immediate, realistic depiction of a completely enraged person running down the street, an anger elemental, nothing but screaming and howling and tearing and biting, and it says Yeah, yeah, that's what we want to do, that is EXACTLY what we want to do. Let's do that. Let's do that right now.

I do not do that, because this is such a small, sad part of me, too small to ever get its way. But when it gets aroused, it is loud and sudden with its passion, and these are the times I get confused, and I chew on my knuckle so hard I leave bruises, or I make snarling utterances I immediately regret to nearby loved ones. That's as bad as it gets, and it's bad enough.

It does not happen with video games, because any zombie-themed videogame I've played strongly binds my identity to my player-character, leaving the zombies safely othered. It does not happen with print media, because when I have more control of how I visualize the monsters, I don't make them align so well with my poisonous little homunculus's fantasy. But with film, I am at the complete mercy of the created depiction.

Heretofore, I did not realize that I saw myself in the monsters, and that the intensely negative emotions I experienced watching their rampage was not disgust but sympathy. I wanted to run around as much as I pleased with such total freedom, too! Those people up on the screen had really figured it out, all right. An inspiration.

Amy, who was very kind to sit and listen while I untangled all this out loud, still thinks the whole thing sounds pretty broken. But I'll tell you what I feel a quite a bit demystified and relieved about it all.

(An examination as to the origins of this feeling, and a comparison of my reaction with others', is outside the scope of this blog post.)
2012-09-01 01:35 pm

Applying Occam's razor to fictional time travel

In the last few years I have settled on what I can't help but feel is the inarguably most elegant way to resolve time travel when used as a plot device, particularly in regards to in-story concerns over "temporal paradoxes". These ideas synthesize descriptions seen in works like Greg Benford's Timescape and the film Primer, which, as I think their implications though, strike me as so overwhelmingly satisfying that I can hardly stomach any other flavor of time-travel magic. (I can make exceptions for implementations appearing in the service of worthwhile artistic effect, such as in the film 12 Monkeys or Charlie Stross's novella Palimpsest, but these are rare.)

Basically: Travelling to the past forks the universe at whatever point you re-enter. For this to work, we must assume that the many-worlds interpretation is essentially true. Since that theory is at least as plausible as the notion that you can send something as big and complex as a living human to a particular point in the past, I have no problem starting with this assumption.

Let's say I'm standing beside you in your lab, as you prepare to press the button that will send you back in time 100 years. You have an agenda in mind, and when it's complete you will use another miraculous device to bring you back into the lab. You press the button and you vanish. From my point of view, you never return. As far as I am (and the rest of the world is) concerned, you simply disintegrated.

I cannot pick up a textbook to discover that, say, World War II never happened, nor will my memories get overwritten to match reality however you intended monkey around with it. The world objectively remains exactly as you left it. Soon enough we must reluctantly come to accept you as dead, and life goes on for the rest of us.

From your point of view, you pop successfully into whatever place you wanted to occupy 100 years ago: success! (Let us handwave away how you're able to appear on the surface of wherever the Earth was located within the cosmos 100 years ago, with your personal velocity adjusted to match the planet's rotation and movement through space and all that stuff, to say nothing of how you can push aside your volume of matter as you arrive without disaster. These magics are all part of the unfathomable-science package that allows you to travel in the first place.) You are now free to do whatever you want, without worry of "temporal paradox". Kill your grandfather! Bribe the art academy to let young Adolf enroll after all! Go nuts tearing up as much of the early 20th century as you can, and observe as reality doesn't fall apart, nor does the family portrait in your pocket fade away one sibling at a time, or anything like that.

This is all possible because at the moment you blinked into existence here, the universe split in two -- just as, according to our basic assumption, it probably does all the time anyway. The "trunk" of this split leads to a future where you, 100 years later, press the button in your lab. The "branch" contains a different set of futures entirely, all which account for whatever mischief you have in mind. No matter what you do, your actions are forever sealed off in the reality-sandbox you created through your travel. You cannot in any way effect the "trunk" timeline that I inhabit and observe.

And woe be unto you if you are so foolish to actually flip that switch on your utility belt to bring you back to the lab! While your adventures did not destroy the future I inhabit, they almost certainly did change the future from your new perspective, and who knows what will exist at the space-time vector that you departed from? Perhaps it'll be your lab, with me waiting there -- this would require both you and I and most of the people we know to be born exactly as happened back in the "trunk", and then follow the same intersecting life-paths, note for note, until the moment you pressed the button. But given all the trouble you caused, that seems unlikely to me. More likely is that you won't recognize the place you pop back into, nor any of the people there, and that's assuming that the spot of your original vanishing in the "trunk" isn't occupied by a thick concrete slab or something in your new future -- ouch.

It's an open question whether the nigh-magic involved in future-directional time travel just blindly bumps you down one path of the branching future, like a ball dropped down a pinboard, or whether it causes an identical iteration of you to emerge into 100 years' worth of branched futures simultaneously. Either way, I don't think you-or-y'all will be in for a good time.

Let's take this another way: you have a more benign experiment in mind. You'll press the button and travel only 10 minutes into the past, and your destination will be the middle of the Sahara. Nothing you can do there can possibly affect the course of human civilization at all, especially in such a short amount of time. Again, you vanish, and again, from my point of view, you are gone forever. From your point of view, you pop open a bottle of water and pass the time, admiring the desolation. Then you flip your belt-switch.

Pop! Here you are back at the lab, with me still rubbing my dazzled eyes from your departure. But that iteration of me is a wholly different one than the one in the time-branch that you left behind. You're still in the separate time-branch that you entered the moment you appeared in the desert. But in that branch, back in your lab, I was helping you fasten your wondrous time-belt apparatus, ten minutes before you pressed the button, and nothing you could do in the Sahara could prevent that future from playing out.

So what happened to the you in your new side-branch? Well, they also zapped themselves into the Sahara, creating another branch. Which will create another, and… yes, a whole lot of recursive side-branching happens there. It goes quite deep, but not infinitely; eventually, along the line, something happens -- perhaps a disaster, perhaps merely a change of mind -- that causes a you-iteration to not travel to the desert. And in that world, a time-traveler iteration of you still appears in the lab, water bottle in hand, and if that means that world now has two of you in the same room, goggling at one another, so be it. There's still no "time paradoxes" at any point in the process.

Interestingly, in this latter experiment, from most of my perspective your time-travel jaunt is a complete success, just like in the movies. I see you vanish, and just as quickly re-appear with a pailful of Sahara sand as proof of your travel. But for that one version of me in the "trunk" timeline where you "first" pressed the button, you vanished for good.
2012-06-24 08:07 pm

Hello

I want to thank all of you who offered kind advice about my parents, when I last posted in March, after my most recent and very disturbing visit with them. I've been putting off proper followup action for a long time, but now feels like the right time to act. I intend to spend the rest of the evening re-reading your responses, drawing definite personal plans, and maybe having a chat with them if it's not too late at night by then.

I have spoken to them, asking why they stayed in Maine, and they answered honestly and immediately: they wanted to stay close to their family. Well, I can't deny that.

I haven't been personal-blogging anywhere. I have a lot to write about, and it would be good if I did. I still haven't let go of LJ as my one personal blogging platform (modulo Twitter); the few times I post, I follow up with a tweet pointing at my post, and that seems to work just fine, really.