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
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
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: https://www.nytimes.com/2009/12/27/health/27sedation.html?unlocked_article_code=PKwX6_hTGgCzXILV7iPhhcI3MqspqXpfBcmzbb4lOOLFCapiY7Ex7qYP5WF9OwSfdjVSlZvdU9mrRzyzyXQytLq6JvorajRbHFumxZlUFa34fNo0x0YFj7ciMBe5nXlnos0SKzx0Hto1AhCJrJOe6PoHqI1Rr_3I5edNIU2Daor0UnMky7Ezh59whCEz1DFns0WVWt5f2scLvlvVymkFDPThvMZR3Q75HRpRUO67sdeQPFDdsa_qn84Sc9esmdrYEaSO7gUpK2UqeHatnBKTxhvtzlL0XYeHirUzSTHjaJ7cHl5UnZXZ64ahMZmjN4-zHvZZ&smid=url-share
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: https://www.gofundme.com/f/for-james-chance-and-judy-taylorSo,
...the mailman just assumed James had moved and stopped delivering his mail because it was piling up in his mailbox.
As a result of this, his Social Security Disability got cut off,
...his bank account had become dormant and they closed it.
― 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 all...as 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
it's a hard thing to admit that there can be a self-centeredness to the very old that makes dealing with them exceptionally difficult. My mother was always a very conscientious person until suddenly she was not. She seemed to have no capacity to understand that her desire to (do whatever) was an extreme inconvenience for her and everyone around her.
― I? not I! He! He! HIM! (akm), Tuesday, 23 May 2023 06:32 (four months ago) link
I'm completely embarrassed about my posts from last night.
The issue was resolved but I was basically just having a panic attack.
Going to spend a few days offline and enjoying my vacation, just wanted to let everyone know I have since come down from the stratosphere
― the manwich horror (Neanderthal), Tuesday, 23 May 2023 23:37 (four months ago) link
Glad it worked out for you. Have some goddamn fun for a change.
― but also fuck you (unperson), Tuesday, 23 May 2023 23:45 (four months ago) link
― broken breakbeat (sleeve), Wednesday, 24 May 2023 00:54 (four months ago) link
he's been out of respite care three days and it's clear they fucked up his care badly. my brother visited most all of the days but not all day and when we got him out, he could barely stand, seemed very weak. his doctor today said he needs an IV. they failed to keep him hydrated.
so yet another work-day interrupted mid-day and now lifting him requires extra upper body strength because he is so weakened.
they couldn't get a vein at his doctor so now we're taking him to urgent care and it just started pouring rain. he looks so miserable.
― the manwich horror (Neanderthal), Thursday, 1 June 2023 17:40 (four months ago) link
My mother in law has developed severe dementia--they think it's Lewy-Body. Tragic in that the decline has come on fast and strong; she's 77 and is now incapable of taking care of herself. We need to move her close by, but she needs 24/7 care. What makes this even more difficult is that she has always been a difficult person, a fairly classic narcissist. I'm quite torn about this situation, but am following my wife's lead, since it's her mother, and her attitude is basically that she can't let her mother die in her own filth, no matter how problematic their relationship has been.
― immodesty blaise (jimbeaux), Thursday, 1 June 2023 18:18 (four months ago) link
Lewy-Body is pretty bad, so sorry.
― The Original Human Beat Surrender (James Redd and the Blecchs), Thursday, 1 June 2023 18:20 (four months ago) link
Thanks. Yeah, I didn't know much (or anything) about it until my mother in law developed it.
I do feel for her on a basic human level. This is someone who lived by her mind all her adult life--she was a gifted academic--and is now incapable of holding a thought for more than a few minutes.
― immodesty blaise (jimbeaux), Thursday, 1 June 2023 18:25 (four months ago) link
I think a brutal disease like that would make me feel sorry for almost anybody who got it (a few evil fucks non-withstanding).
definitely understand the difficult position both you and your wife are in, wishing you both the best.
― the manwich horror (Neanderthal), Thursday, 1 June 2023 21:14 (four months ago) link
Please forgive me if this is trying too hard to relate or some kind of oversharing but a little while back my kid’s piano teacher told me that a friend of his was dying and had LBD and he asked me if I knew what it was. He then explained something about it and told me it was what Robin Williams had at the time he died which caused him various mental problems that then led to what transpired. So yeah, my sympathies.
― The Original Human Beat Surrender (James Redd and the Blecchs), Thursday, 1 June 2023 23:56 (four months ago) link
Nothing to forgive, I appreciate your sharing. I didn't know that, or maybe had forgotten it, about Robin Williams until my mother in law was diagnosed. One of its characteristics is earlier onset than is typical with, e.g., Alzheimers.
― immodesty blaise (jimbeaux), Friday, 2 June 2023 00:04 (four months ago) link
My mother had dementia. For a while it was kind of fun to try to help her complete her sentences when she was still cheerful. A friend of mine had described this kind of interaction to me many years ago. She stayed cheerful for a long time as her vocabulary kept shrinking until she only knew a few choice words. At the very end she couldn’t talk at all, seemed generally fearful, didn’t recognize me or my kids and didn’t seem to know who anyone was except maybe my father and would get very disturbed if he left her alone for too long. All this kind of stuff didn’t bother me that much at the time as if my extra Vulcan eyelid protected me somehow. Plus my sister was the one dealing with most of it. Of course there was plenty of stuff to sort out during the subsequent grieving process. A friend of mine lost his mother recently and I told him that I experienced the aftermath as some sort of rolling blackout, where sometimes I didn’t know what was ailing me and had no way to articulate it, but it felt like something was happening way down inside in some subterranean river that I had no way to access directly. I am a bit surprised I am typing about it now, maybe it’s because it’s pretty much eleven months ago as of this month.
― The Original Human Beat Surrender (James Redd and the Blecchs), Friday, 2 June 2023 00:19 (four months ago) link
That made me choke up. Thanks for sharing, JRB.
I am really, really hoping that my soon-to-be-80-year-old mother does not go through this. There is no family history, as far as I know. I am pretty convinced that she'll just go until her motor winds down completely, from one day to the next. With any luck (for her), she'll go in her sleep or on the golf course.
― immodesty blaise (jimbeaux), Friday, 2 June 2023 00:25 (four months ago) link
my mom will turn 80 in august. until four months ago, the big problem was 'how can i get her out of her house'? fortunately (honestly) she had a crisis in february and is now in a home that offers memory care
needless to say, she hasn't really paid any bills recently, so that's a struggle. she does at least (presumably) have the money to do so.
sometimes she's a bit sad that she's not ever going to go back to her house, but honestly she's been so friendly to the people who take care of her, and so loving to me, who is not dealing with all this particularly well, that it makes me cry.
for the last year or so she (who has multiple masters degrees) has just been reading harry potter again and again. she'll say that she's read them before, but that it was a long time ago. i went to some lengths to put like a hundred similar books on her kindle -- narnia, the dark is rising, whatever -- but inevitably they've 'disappeared' and she cannot find them.
i haven't read them, but i guess there are worse worlds to get stuck in than harry potter? certainly there's quite a lot of it.
anyway yeah, it's bad. and i feel like i'm failing her
― mookieproof, Friday, 2 June 2023 01:33 (four months ago) link
I don't know if it's appropriate but my workplace offers a free online course in understanding dementia - it's aimed at anyone interested, but particularly people who care for folks who have dementia. There's helpful knowledge about care and causes, etc., and it also offers a sense of community which can be a huge deal for people feeling isolated. Something like half a million people have done it and it's very highly regarded. It's offered a few times a year and the next run begins in July:https://mooc.utas.edu.au/course/33
― assert (matttkkkk), Friday, 2 June 2023 01:55 (four months ago) link
Dementia is the worst. I really don't want my son to go through this with me, I fear that a lot more than death, in fact I'd welcome death rather than years of dementia. My Dad had a very slow decline into dementia that went on for about a dozen years before he finally died a couple of years ago. It was hellish to watch. He too was an academic and a professor of medicine and to watch his mental abilities just fall away like that was beyond sad - my Mum refusing to acknowledge what was happening didn't help either. It was probably a lot worse for us than for him though. He never had insight into what was happening to him, and while there was an early period when he was clearly confused and anxious, once dementia took fully hold, he was fairly serene and placid with it. Not the case with all dementia patients I know - when I visited Dad at his residential care, there were a lot of very troubled and even violent dementia patients there. Anyway, fuck dementia, and my sympathies for everyone going through it with their loved ones.
― Zelda Zonk, Friday, 2 June 2023 02:01 (four months ago) link
Dementia is one of my biggest fears; it's right at the top of my "reasons to pull the rip cord without hesitation" list.
― but also fuck you (unperson), Friday, 2 June 2023 03:24 (four months ago) link
i feel like i'm failing her
This killed me. I can completely identify with this feeling, and I am completely confident that you are not failing her. Her illness is not your fault, and it sounds as though you are there for her, which is all any of us can really do.
― immodesty blaise (jimbeaux), Friday, 2 June 2023 03:28 (four months ago) link
my mom died last month, we did home hospice as I hinted at above, I'm not sure at what point I'll be able to completely process what that experience was like. suffice it to say I swore to my wife and child that I would never do that to them.
― I? not I! He! He! HIM! (akm), Friday, 2 June 2023 03:31 (four months ago) link
I'm so sorry for your loss.
― immodesty blaise (jimbeaux), Friday, 2 June 2023 03:32 (four months ago) link
xps one thing you might get from the online course is insight to the way people live good lives with dementia - you can't avoid the effects or progression of most of the diseases which cause it, but there are ways to live and interact which maximise the good things and work around the bad. I'm no Pollyanna, and dementia is a fucker in general, but there is a lot of stigma and fear around it which is often very isolating for the people who have it, and for their families and carers. People shy away, stop coming around, break contact - and that can have an even greater effect on quality of life than the disease does.Not trying to preach, just to say there's likely more to it than you've previously encountered or heard about.
― assert (matttkkkk), Friday, 2 June 2023 04:31 (four months ago) link