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I've not read it (it came out at a time I wasn't able to tackle it) but I have heard wonderful things about Dying - A Memoir by Cory Taylor (an Australian writer). A friend was involved with it at the time and said it was a remarkable piece.

assert (matttkkkk), Monday, 20 March 2023 23:15 (six months ago) link

Being Mortal, Atul Gwande

mom tossed in kimchee (quincie), Tuesday, 21 March 2023 00:35 (six months ago) link

I depended on advice and instructions from professional caregivers, but books might have helped, might help the next time, at least in getting more focused----here are a bunch, incl. authorized manuals; checking customer reviews might give a fairly clear idea of any that could be useful, possibly:

dow, Tuesday, 21 March 2023 02:00 (six months ago) link

Thank you all, much appreciated <3

not too strange just bad audio (brimstead), Tuesday, 21 March 2023 04:05 (six months ago) link

STRONG recommend for this book DIGGING OUT by Michael Tompkins (who you may recognize if you have watched any latter-day Hoarders, he's one of the doctors and is very compassionate -- and effective) I finally found someone to help my mom with her living situation (a professional organizer via NAPO) and she recommended it to me. I finally started reading it and wish I had known about it earlier, it would have really eased some pain.
Anyway, if you are dealing with a loved one who has a hoarding tendency/problem, this book is for you <3

Piggy Lepton (La Lechera), Tuesday, 21 March 2023 14:34 (six months ago) link

My dad developed complications from the surgery he underwent last week to put a stent in his carotid artery. The possibility of his death, which I thought I had reconciled myself to, has hit me much harder than I thought it would have. He seems to be making slow but steady improvements, which is good, but I'm really worried and sad about the idea of losing him, and that's something I didn't expect, given our relationship.

immodesty blaise (jimbeaux), Tuesday, 21 March 2023 14:41 (six months ago) link

sorry to read about everyone else in the same/similar boat. I will say that taking ativan every morning is helping me significantly with my own anxieties about what is likely going to be a very shitty upcoming month. My mother has been hospitalized 4 times in the past week for falls caused by low blood oxygen; they kept releasing her but are now holding her until my sister arrives, at least. We are going to have to convince her to go on hospice care; I'm fairly positive they are not going to grant her more chemo treatments but she's under the delusion that they will. I've nothing against chemo in theory and it certainly has extended her life; she's lived 2 years longer than anyone expected, but it's clearly time to stop now, it's stopped working against her cancer which is spreading. I'll be heading to south dakota over the weekend and spending what I fully expect to be 2-3 weeks of hell trying to sort out what's next.

I? not I! He! He! HIM! (akm), Tuesday, 21 March 2023 15:30 (six months ago) link

first of all, brimstead, I am so very sorry to hear about your situation, and send my best. same for akm and jimbeaux.


hootenanny-soundtracking clusterfucks about milking cows (Neanderthal), Tuesday, 21 March 2023 15:33 (six months ago) link

I guess there was no second of all, sorry about that.

hootenanny-soundtracking clusterfucks about milking cows (Neanderthal), Tuesday, 21 March 2023 15:34 (six months ago) link

sending love and strength to you all!

Goose Bigelow, Fowl Gigolo (the table is the table), Tuesday, 21 March 2023 16:49 (six months ago) link

re: books on dying, many many years ago I read Sogyal Rinpoche's The Book of Living and Dying. I had flirted with buddhism at the time, didn't commit to it as a practice, but I don't think you need to to find much of this book very comforting. Much of it has stayed with me and I'm likely going to read it again soon.

I? not I! He! He! HIM! (akm), Tuesday, 21 March 2023 16:56 (six months ago) link

Having watched the most recent John Oliver episode my biggest current worry with my mom is that I think she owns a timeshare in Mexico that I might get saddled with when she dies. (If that turns out to be the case, I will fly down there and set the building on fire and see whether that resolves the issue.)

but also fuck you (unperson), Tuesday, 21 March 2023 18:29 (six months ago) link

and make Mexico pay for it?

hootenanny-soundtracking clusterfucks about milking cows (Neanderthal), Tuesday, 21 March 2023 18:35 (six months ago) link

(jokes 7 years past expiry-date!)

hootenanny-soundtracking clusterfucks about milking cows (Neanderthal), Tuesday, 21 March 2023 18:35 (six months ago) link

I lolled

immodesty blaise (jimbeaux), Tuesday, 21 March 2023 18:39 (six months ago) link

Didn't know about xpost Digging Out, thanks! A very illuminating study-saga that quincie and Elvis Telecom recommended, on this very thread, I think, is Stuff: Compulsive Hoarding and the Meaning of Things, by pioneering researchers-therapists Gail Steketee (quincie's professor) and Randy Frost. I'm a bit leery of hoarding bools about hoarding (why they say they've stopped giving print-out sheets in workshops), so haven't checked their others yet---but Digging Out looks good...

dow, Tuesday, 21 March 2023 19:05 (six months ago) link

Oh yeah i read STUFF back when it came out, again a few years later. It's good for understanding hoarding and its many facets. Digging Out is specifically aimed at family members trying to deal with loved ones who are exhibiting hoarding behaviors. They're both good!

Piggy Lepton (La Lechera), Tuesday, 21 March 2023 19:31 (six months ago) link

thanks, that looks super helpful.

sending best wishes to akm and jimbeaux

this really sucks.

brimstead, Tuesday, 21 March 2023 19:42 (six months ago) link

Got mom to acquiesce to home hospice since it's clear there is nothing more they can do. Not entirely sure she's fully aware of what this means, since as of earlier this morning she was telling my sister she thought God would cure her if she got more chemo. Not entirely sure how all of this will go; I'm heading there on Sunday, which is probably about when they'll send her home. I'm hoping she goes fast, the hospice nurses only come 3x a week apparently. We can't really afford to pay for any additional carers.

I? not I! He! He! HIM! (akm), Thursday, 23 March 2023 21:38 (six months ago) link

I am so sorry, akm.

immodesty blaise (jimbeaux), Thursday, 23 March 2023 21:39 (six months ago) link

I'm so very sorry, akm :(

hootenanny-soundtracking clusterfucks about milking cows (Neanderthal), Thursday, 23 March 2023 21:45 (six months ago) link

thanks everyoone.

the weird thing about home hospice is it seems to be a nod-and-wink euthanasia , which I am not morally opposed to, but the vague terms the medical establishment uses leave lots of room for interpretation. For instance, in the hospital notes, it says: "Daughter is updated that while she is with her mother in the hospital to get "hands-on" with medication for comfort". this is still in the hospital. what does this even mean? beats me.

I? not I! He! He! HIM! (akm), Thursday, 23 March 2023 22:03 (six months ago) link

I think it's more stopping treatment of the various ailments and letting things take their course, which kind of accelerates the process. that's very much what my grandma's hospice was - mostly about keeping her comfortable and free of pain.

that note's a bit confusing in its wording but I think it's saying "she will be given medication to keep her comfortable on request and as needed".

hootenanny-soundtracking clusterfucks about milking cows (Neanderthal), Thursday, 23 March 2023 22:07 (six months ago) link

When my mother-in-law was switched to hospice care, she was completely unconscious and died pretty much the next day. When my grandmother was, on the other hand, she lingered for a couple of weeks, with my mom basically keeping watch at her bedside all day every day. She was 99% gone, too, you couldn't talk to her or anything, but then she'd take a ragged gasping breath, scaring the shit out of my mom, and then lapse back into corpsehood. It wasn't a whole lot of fun. It sounds like your mom is still awake and aware of her surroundings, so I would say I hope it goes well, but... "well" in my experience translates to "unconscious patient, quick expiration," so... good luck.

but also fuck you (unperson), Thursday, 23 March 2023 22:10 (six months ago) link

xps speaking as someone who had my FIL die at home w/us in hospice, the "comfort" part basically means "give them as much morphine as they want, it's ok now"

obsidian crocogolem (sleeve), Thursday, 23 March 2023 22:45 (six months ago) link

I am so glad you got to this stage akm, wishing you an easy transition

obsidian crocogolem (sleeve), Thursday, 23 March 2023 22:45 (six months ago) link

my sister seems to think she will live another month, maybe two, which seems delusional to me. my mom did live much longer on chemo than originally thought, but she's about to have no medical interventions of any kind and we already suspect she had a heart attack a week ago on top of everything else.

I? not I! He! He! HIM! (akm), Thursday, 23 March 2023 23:23 (six months ago) link

so sorry, akm <3

brimstead, Thursday, 23 March 2023 23:47 (six months ago) link

i hope everything goes as well as it can, akm. i'm sorry things are like this.

so amazing moments ever. . (cat), Friday, 24 March 2023 00:07 (six months ago) link

Wishing you and your family the best, akm

Jeff Wright, Friday, 24 March 2023 02:53 (six months ago) link

Adding to the good wishes. I hope all can be peaceful as possible.

Ned Raggett, Friday, 24 March 2023 03:51 (six months ago) link

two weeks pass...

dad's been pretty good for a while, but I guess I was naive regarding how facilities work with disabled people. dad has an echocardiogram today, and originally I was going to drop him and mom off, because I'm watching a virtual class, but I opted to stay as I had a bad feeling that they wouldn't be able to get him onto the bed for the test. Sure enough, they could not, and I had to go and move him and position him all myself. I guess they also might not want to due to liability reasons, whereas a hospital has no choice.

there are also two separate Adult daycares that refused to let my dad go there because he was (their words) "too big", saying they'd need two staff members to help get him onto and off the toilet, etc, and didn't have the staff available to devote two to him. He's 6'0, 175 pounds (far below his pre-disability weight of about 220), but he still has the same body shape from when he was bigger, so I think this is people making judgments purely off of the eyeball test.

meanwhile, I'm one person without training, I'm not swole, and I lift him and move him by myself daily with ease. even my tiny mother used to get him up by herself pre-lung cancer surgery! he pushes up with his feet, so all you have to do is use his momentum to keep carrying him upwards. it's somewhat annoying because adult day care would be good for him and us, but otoh, I don't think I trust him at a facility anymore so I'd rather him be with us during the day.

Trout Fishing in America (Neanderthal), Friday, 7 April 2023 15:37 (five months ago) link

places definitely have what seem low weight limits on these things. We got 4 hours of homecare a day to help with my mom through hospice and they aren't supposed to life more than 25 pounds, which means if she needs to get up I'm the one who lifts her. She's about 90 pounds now and I'm a fucking weakling though I was working out daily for the past three months in anticipation of this.

She won't be getting up much going forward. We had about a week of pretty horrifying days on home hospice before I really got a sense of how this was going to go, which is: as soon as you can tell the codeine doesn't work, it's time to go to liquid morphine, and you will start increasing the dosage of that fairly liberally, you just have to call and let them know.

It's been hard to really get a handle on hospice, finding this relatively old article on the NYT helped quite a bit:

My mother doesn't express pain in a normal way; she starts folding and refolding kleenex, getting weird, hallucinating. The goal is to keep her sedated as much as possible with morphine and ativan. She takes a truckload of ativan; I take .5 in the morning myself daily these days, and she takes that much every 2-3 hours. Her blood oxygen and heart rate fluctuate wildly and are usually the best way for me to tell she's in distress because she will rarely vocalize it. She barely ate today and I have a sense she will not eat much more. She had one smoke break this morning and has not asked for more; nor has she asked for the coffee that she drinks almost 24 hours a day normally. I'm meant to fly home on Wednesday and my sister will take over if she hasn't died yet; but I'm not sure. On the one hand I miss my family and dogs but knowing I'd likely have to turn around and fly back here within days makes it not seem worth it.

I? not I! He! He! HIM! (akm), Saturday, 8 April 2023 05:07 (five months ago) link

akmm wishing peace for your mom and strength and peace for you. And everyone else dealing with aging parents.

This machine bores fascism (PBKR), Saturday, 8 April 2023 11:38 (five months ago) link


This machine bores fascism (PBKR), Saturday, 8 April 2023 11:39 (five months ago) link

Co-sign. Sending you strength and warm vibes, akm

Trout Fishing in America (Neanderthal), Saturday, 8 April 2023 13:36 (five months ago) link

Not actually a parental issue, but re aging disabled family members in general, and some stuff I may have to deal with and would like to understand better before it comes up---please read the following succinct initial narrative and then the latest update, which is what my questions will quote:

...the mailman just assumed James had moved and stopped delivering his mail because it was piling up in his mailbox.

]I guess this might have happened between the "rather sudden death" of his father, who was directing his care or at least financing it from afar and the arrival of the aide from social services, nobody came around to pick up the mail, and take it up to James---okay, but then
As a result of this, his Social Security Disability got cut off,
which I don't get: do you have to answer queries periodically in order to keep receiving it? According to Social Security site, you can designate a benefits mananger; maybe his father was that, and fund organizer David, who shares James' gov. surname, didn't know to see about having it changed over.
Also in that update:
...his bank account had become dormant and they closed it.
Now, David says that Disability was his only form of income other than Gofundme, but the site's says that you must receive benefits via electronic transfer, but you don't have to have a bank account, you can use a Direct Express debit card---but if indeed he was cut off because he---wasn't withdrawing any SSD money? You can't save it if you are, say, getting donations, but not working, not violating your Disabled status? Apparently he wasn't getting any GoFundMe either, until David pulled some as an emergency, so whaaat was James living on? The last money from his father, stashed in his apartment? Maybe the trustworthy aide, who helped David some way about the GoFundme, could be benefits manager if SSD is restored, with no family members near enough in various senses---
There's no way to know the particulars, but I'm wondering if any of the professionals and other family care veterans on here could hazard educated guesses? Looking ahead on my part...

dow, Thursday, 20 April 2023 00:21 (five months ago) link

sorry for late response. it's possible that the time came up for re-review of his disability status, and they notified him via mail, and he didn't reply, causing his Social Security to be suspended? granted, they don't do these re-reviews often, but they do them periodically over the life of the disability.

Cthulhu Diamond Phillips (Neanderthal), Saturday, 29 April 2023 03:34 (five months ago) link

Thanks Ne! Looked on the ssa site, somehow missed that. Stands to reason that they would check back at least once in a while.

dow, Monday, 1 May 2023 03:36 (five months ago) link

Dad's headed to ER. choked a bit during dinner, as he has swallowing problems, seems to have possibly aspirated some food though and had a harder time clearing his airway. Temperature elevated and he's still making gurgling noises hours later.

Due to risk of pneumonia being precautious.

I'm ok. Had been a long time since last visit. We'll see what's what

Qeq-hauau-ent-pehui (Neanderthal), Monday, 8 May 2023 02:43 (four months ago) link

Chest x ray didn't seem to show anything untoward, which is good. But high WBC which suggests an infection.

Waiting for results on that so he can get antibiotics.

His colons a mess (lol not shocking), possible impaction or colitis. Tbh kinda glad we brought him in to address that

Nothing earth shattering so far.

Qeq-hauau-ent-pehui (Neanderthal), Monday, 8 May 2023 14:10 (four months ago) link

Hoping everything gets sorted out for him soon. Were you there with him all night?

Jaq, Monday, 8 May 2023 16:55 (four months ago) link

Til 2:30 am. Went back this morning.

He's getting antibiotics and an IV but partly due to him moving his arm and their ineptitude, 70% of the time I've been there, his line has been occluded.

This last time they took 35 minutes to show up to fix it, flush it, and two minutes after nurse left, without dad doing anything, it became occluded again.

Gonna be done getting antibiotics in 2035 at this point

Qeq-hauau-ent-pehui (Neanderthal), Monday, 8 May 2023 17:24 (four months ago) link

^all that got fixed yesterday, he's finished one course of antibiotics, onto the next. we couldn't be here early this morning because someone hit mom's car a few weeks ago and today was finally the day we had to drop her car off to be repaired at 10 am, so naturally that's when the doc came by.

he keeps cancelling dad's swallow study, but dad is making congested/throat clearing/gurgling noises he's never made before constantly so I asked the nurse to ask him why and he left three voicemails. fun. not letting them discharge him until they answer me that.

his last blood test shows he's clearly still fighting an infection, his WBCs are normal but his neutrophils are high, his RBC is low but could be because he didn't resume getting food until this morning. doc said he might un-cancel the GI consult he previously cancelled due to the drop, took blood again.

he looks miserable. it sucks. but not in immediate danger.

not COVID, they did a PCR on admission. and his oxygen levels are fine.

i love being work from home because I get to be here w/ him all day and still not have to burn wellness time.

Qeq-hauau-ent-pehui (Neanderthal), Tuesday, 9 May 2023 17:06 (four months ago) link

alright, he's coming home. I talked to the doc, i'm ok with what he told me.

Qeq-hauau-ent-pehui (Neanderthal), Tuesday, 9 May 2023 19:13 (four months ago) link

you know, the one thing that has kept me from having a complete and permanent breakdown has been the ability to occasionally take a break and do things for myself. The one thing I wanted...the only thing...was to take a trip this year. with my best friend. to a metal festival.

I planned this five months ago. Dates and everything, so we could work out the respite care. Although I was the person who got our medicaid approved, since approval, mom handled it last time and knows better how we set up the respite care. The last time around, we had to start it a day late as mom got the final form needed to the office too late, so I was adamant about us getting this done sooner this time around.

Mom assured me she'd taken all of the steps necessary, contacting the facility and the coordinator, but I kept asking about the form from last time and she kept saying she didn't remember doing that, and I kept reminding her to check. She promised to call during the week and didn't several times - I could not as I was working during their business hours, teaching a class. Finally she called them and sure enough, there was a form needed after I'd been insisting all along. so I had to run out and print out the forms and we got them to them on Friday and dad's respite care was approved.

For a whopping day. today, they call back and say there's a balance left from the last respite care stay and that they can't accept him until that is dealt with. Apparently the Medicaid provider didn't pay them (so she claims - we have not seen a single bill from this place).

I was out all afternoon and had this all dumped on me when I walked in the door. so my first thought is to go on the medicaid provider website to look up the claim - nope, can't do that, mom somehow deleted the saved password from her Chromebook and has no recollection of what it is, and can't remember her security questions, so we're completely locked the fuck out unless we call and wait on hold a half hour.

Oh, but the admissions director gave mom her private number to talk to her with any questions! that'll help!

Nope, she lost that too. managed to write it down on a sheet of paper, not enter it into her phone, and leave it at the doctor's office she went to today.

I am now spending the entire evening trying to solve this on my own despite having two of the things I need to fix this being unavailable. I know my mother is under a lot of stress too but I had a vacation planned, one that I've sunk over $500 on as has my friend. I can't get a refund...I don't want one either. I need this! I haven't had a vacation in three years. Even my mother got one last year when dad was put in respite care (my brother and I visited him to keep him company).

if this falls through...I have no earthly fucking idea how the hell I'm going to go on this trip. as it is, I may have to pay the due balance by credit card (which, btw, I only have one left with any credit on it, because I'm in debt relief). or work out some kind of plan where I pay for a nurse to come in the morning and night for five days, which will cost me frankly as much as the vacation will. or have mom leave dad in bed all day and have my brother come over every now and then to help get him up. Mom was supposed to go out of town too, so there's also that.

i'm about to have a complete panic attack right now. it's so fucking unfair because I did everything right, communicated the dates months in advance, and she still managed to drop the ball. had we gotten the form to them weeks ago, we'd have found out the billing thing weeks ago.

this was literally the one thing....the only thing I said could not be screwed up. any other plan I make throughout the year, whatever..shit happens. but the one bit of relief I've been seeking for three years and now it's in jeopardy.

the manwich horror (Neanderthal), Monday, 22 May 2023 23:18 (four months ago) link

Wednesday is the day we were supposed to drop him off. so my tomorrow is ruined now too. first two days of my vacation and they're going 'wonderfully'

the manwich horror (Neanderthal), Monday, 22 May 2023 23:19 (four months ago) link

before anybody invariably asks me why I didn't just take charge myself if this was so important to me, well...I handled the entire Medicaid application, which stretched over 2+ years. it was a bear. I spent hours upon hours of my time filling out the lengthy application, and revising it two years later when we finally came off the wait list. also responding to follow-ups, scanning and faxing tons of requested documents, and then putting in hours of written escalation when we were improperly denied because the fucking idiot at the Area Agency for Aging claimed we never sent him the documents which we sent him three times (and I had the receipts to prove). like once it got approved, it felt like a miracle, and everything was supposed to be simple after that.

mom handled the respite care issue mostly without issue last time, the only problem was taking too long to get the final paperwork dropped off, and I felt like it'd be easier for her to handle since she had last time and I had no idea how to initiate the process. I assumed learning what we knew last time and notifying the respite care place earlier than last time that we'd be ok. didn't start to notice the cracks until we were weeks out.

welp, going to take a sleep aid and go to bed tonight so tomorrow can get here faster and I can hopefully fix this.

the manwich horror (Neanderthal), Monday, 22 May 2023 23:39 (four months ago) link

hope things fall into place swiftly and easily for you. and if they do not, that you can find the patience and strength to persevere until it's all settled and moving in the right direction again.

more difficult than I look (Aimless), Tuesday, 23 May 2023 04:39 (four months ago) link

Good god what a fucking disaster Neando, that is so unfair and a very crappy outcome for avoidable issues you tried to push people to avert well in advance. I hope it's due to not really comprehending how this would impact on you, and a series of slips and errors that you're unfortunately forced to cover because nobody else has been able to. "The buck stops here" indeed.
On the plus side of the ledger I have been giving my folks extra support this last few weeks with some cancer scares etc. but yesterday my dad came up clear and that's taken the issue off the agenda for now. I suppose at 79 something will turn out to be serious sooner or later but not today, not today.

assert (matttkkkk), Tuesday, 23 May 2023 04:48 (four months ago) link

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