dad's been fidgeting a lot in his sleep the last few days, moving his legs around and sometimes off of the bed, and his pulse has been over 100 and he's woken up breathing heavy, though his oxygen and temperature are fine. His pulse used to be high regularly but he went on beta blockers so now it's normally in the 70s. he did tell us he felt dizzy. also, he has restless leg syndrome (as do I), so wasn't sure if that's why the constant leg movement. we also suspect dad probably has anxiety, for obvious reasons, so there's that too.
Naturally, mom's frantic nature didn't help, as first she comes in telling me dad's oxygen is at 40% when she put the oximeter on him - I had to remind mom that if it were that low, he'd be near death, that it probably slipped off, and when she retook it, of course it was like 98. then she badgers dad with a battery of questions and then gives him no time to respond, even though he's mostly non-verbal and takes a while to respond, which no doubt stressed him out.
trying to figure out whether to take him in to be checked out or what, but this was a good reminder to get a new bed rail since our last one was recalled.
― hootenanny-soundtracking clusterfucks about milking cows (Neanderthal), Thursday, 9 March 2023 15:09 (three months ago) link
pulse back to normal, so we're just gonna watch and see. honestly he's been like this on random occasions before, and we have blood pressure cuffs/oximeters/thermometers checking him regularly.
― hootenanny-soundtracking clusterfucks about milking cows (Neanderthal), Thursday, 9 March 2023 15:21 (three months ago) link
update on my above situation (I've since been out to spend time with her once, with my wife and the kid, who she hadn't been able to see in years now) and that was a good visit and my assessment at the time (mid Feb) was that she had about 2 months left, and that seems to be holding up. Her cancer has started to spread, so they were going to change the treatment this week, but it was apparent her blood ox was extremely low; a few days in the hospital indicating the cancer came back in her lungs in a manner that it's restricting oxygen. Recommendation from oncologist is going to be to stop chemo. She was hospitalized but left against medical advice today saying she was going home to her dog and is insisting she will get chemo next week. Appointment in the morning I think will disabuse her of this notion. My sister and I are handling all of this remotely while her old friend transports her to and from the hospital. They did send oxygen home with her...but she fucking smokes. So she's either going to blow herself up, or, more likely, just not use the oxygen enough, get hypoxia and pass out again (which is what happened this week). She's still alone. Sister going up next week and me a few days later...and probably remaining there for some time (but I suspect that won't last longer than the end of April at most).
― I? not I! He! He! HIM! (akm), Friday, 17 March 2023 03:02 (two months ago) link
Sorry to hear that, akm. Smoking is the devil. When I was in my late teens, my grandfather got me to sneak him cigarettes into the hospital where he was recovering from having surgery to remove a cancerous section of his colon. He would not, or could not, quit.
― immodesty blaise (jimbeaux), Friday, 17 March 2023 03:10 (two months ago) link
it is really insane. I say that as someone with a history of substance abuse issues, but in no way do any of them compare to the insane grip cigarettes have had on my mother. they are her only true love. she talks about how her brother taught her to smoke when she was 13. she has never once stopped. I smoked half heartedly for about 2-3 years 30 years ago and finally quit because I hated the smell on my clothes.
― I? not I! He! He! HIM! (akm), Friday, 17 March 2023 03:13 (two months ago) link
does anyone have any book recommendations or internet resources to support someone with a terminally ill parent? feeling pretty lost right now.
― not too strange just bad audio (brimstead), Monday, 20 March 2023 20:30 (two months ago) link
I don’t right at the moment but I wanted to say you’re not alone here, I hope you are finding some strength brimstead
― assert (matttkkkk), Monday, 20 March 2023 20:53 (two months ago) link
thank you, mattt
― not too strange just bad audio (brimstead), Monday, 20 March 2023 21:15 (two months ago) link
i'm sorry, brimstead. i also don't know of any resources for your particular situation, but like mattt, i'm wishing you all the support and strength i can. little acts of kindness could help them, or maybe gently asking them what they need right now? it's difficult all around. <\3
― so amazing moments ever. . (cat), Monday, 20 March 2023 21:26 (two months ago) link
Brimstead, this is not exactly what you are asking for, but I found the book Staring at the Sun, by Irvin Yalom, to be immensely helpful in addressing anxiety about death. It may be of some comfort in thinking about your own parent's passing. It doesn't really contain any practical advice about caring for someone who is terminally ill, though.
― immodesty blaise (jimbeaux), Monday, 20 March 2023 22:08 (two months ago) link
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. https://www.textpublishing.com.au/books/dying
― assert (matttkkkk), Monday, 20 March 2023 23:15 (two months ago) link
Being Mortal, Atul Gwande
― mom tossed in kimchee (quincie), Tuesday, 21 March 2023 00:35 (two 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:https://www.amazon.com/Hospice-Palliative-Care/b?ie=UTF8&node=689744011\
― dow, Tuesday, 21 March 2023 02:00 (two months ago) link
Thank you all, much appreciated <3
― not too strange just bad audio (brimstead), Tuesday, 21 March 2023 04:05 (two 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 https://www.goodreads.com/en/book/show/5132666
― Piggy Lepton (La Lechera), Tuesday, 21 March 2023 14:34 (two 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 (two 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 (two 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 (two 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 (two 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 (two 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 (two 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 (two months ago) link
and make Mexico pay for it?
― hootenanny-soundtracking clusterfucks about milking cows (Neanderthal), Tuesday, 21 March 2023 18:35 (two months ago) link
(jokes 7 years past expiry-date!)
― immodesty blaise (jimbeaux), Tuesday, 21 March 2023 18:39 (two 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 (two 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 (two months ago) link
thanks, that looks super helpful. sending best wishes to akm and jimbeauxthis really sucks.
― brimstead, Tuesday, 21 March 2023 19:42 (two 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 (two months ago) link
I am so sorry, akm.
― immodesty blaise (jimbeaux), Thursday, 23 March 2023 21:39 (two months ago) link
I'm so very sorry, akm :(
― hootenanny-soundtracking clusterfucks about milking cows (Neanderthal), Thursday, 23 March 2023 21:45 (two months ago) link
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 (two 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 (two 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 (two 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 (two 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 (two months ago) link
so sorry, akm <3
― brimstead, Thursday, 23 March 2023 23:47 (two 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 (two months ago) link
Wishing you and your family the best, akm
― Jeff Wright, Friday, 24 March 2023 02:53 (two months ago) link
Adding to the good wishes. I hope all can be peaceful as possible.
― Ned Raggett, Friday, 24 March 2023 03:51 (two 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 (two 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 (two 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 (two months ago) link
― This machine bores fascism (PBKR), Saturday, 8 April 2023 11:39 (two months ago) link
Co-sign. Sending you strength and warm vibes, akm
― Trout Fishing in America (Neanderthal), Saturday, 8 April 2023 13:36 (two 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 (one month 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 (one month 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 (one month 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 (one month ago) link