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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.

Jun. 26th, 2013

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.

Jun. 8th, 2013

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.

Jun. 3rd, 2013

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.

Jun. 1st, 2013

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.

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.

May. 27th, 2013

Word of the day: 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.

May. 27th, 2013

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.

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.

Status update

Here is an obituary I wrote:

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

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