AGING PARENTS

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

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.

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.

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

*akm*

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

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-taylor
So,

...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.

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.

https://www.ssa.gov/pubs/EN-05-10053.pdf

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

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

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.

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

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

^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.

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

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.

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'

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.

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.

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.

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'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

Glad it worked out for you. Have some goddamn fun for a change.

https://www.youtube.com/watch?v=2RHTiXvELNg

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.

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.

Lewy-Body is pretty bad, so sorry.

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.

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.

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.

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.

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.

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.

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

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

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.

Dementia is one of my biggest fears; it's right at the top of my "reasons to pull the rip cord without hesitation" list.

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.

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'm so sorry for your loss.

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.

for anybody who struggles w/ the feeling of falling short w/ your ailing parents, which I very much empathize with, my mother kinda hit it on the head the other day after I apologized to dad for the umpteenth time when he moaned in pain when I was lifting him.

she pointed out the pain is going to be there no matter what we do, we ourselves can't make it go away, but that we should go easy on ourselves because we are doing our best. and especially for those itt who have made numerous life sacrifices to do it - you're giving everything you have to your parent. they might not be able to appreciate it, communicate it or comprehend it. but you're doing an incredible thing.

you'll screw up sometimes. you'll lose patience. and sometimes you'll not be able to stop yourself from feeling guilty - but it's good every now and then to remind yourself "I'm doing my best for the person I love" and just keep on loving them.

I have no firsthand experience with dementia so I'll defer to the experts above but my heart goes out to everyone who has lived with or is currently living w/ a parent or loved one with dementia. it's one of life's cruelest hands.

Back to the hospital for dad. He's been a changed man (and not in a good way) since he got back from Respite and it hasn't improved.

His legs and knees are still really stiff and he doesn't want to extend them. He became so dehydrated on Thursday that we had to get him an IV . They suspected a UTI but told us to call if he worsened and needed an antibiotic before the results came back.

Yesterday he developed a 101 fever and was disoriented, so we got the antibiotic script and let him rest. His fever seems to be going down but he's been somewhat catatonic, not reacting to those around him, not wanting to eat or drink on his own without help.

And then tonight he had the worst diarrhea he's ever had in history. Literally got everywhere, we spent 90 minutes cleaning him up.

His mobility completely changed in one mere week.

With all these concurrent worries, we want to see if we're missing something here.

If something turns up to indicate maltreatment at respite care on his diagnosis, I'm going to file a complaint. I am convinced he injured himself and they hid it. Especially given the way he was positioned when we picked him up.

Mom and I are ok though. Looking into palliative care and pending results of ER visit, we are applying for more hours for Medicaid - process already started.

At hospital. Took him to a different one this time. Took him to the one that successfully took out my mom's lung cancer.

*Palms up*

LOL DOCTOR SAID MY DAD'S PEE WAS HORRIFYING

That's never good. Sorry you're going through all this, Neanderthal. Your devotion is pretty amazing.

thanks <3

he's better. I'm losing my voice. antibiotics zapped out my sinus infection but unfortunately the post nasal drip and residual congestion gutted my throat. it happens all the time...going to ENT to see about fixing my deviated septum.

can't wait for him to get food. we were just about to feed him dinner yesterday after getting him rehydrated when we realized he needed to be seen.

I am working overtime to fight the guilt. I keep making and breaking promises to him, not out of fault but first it was "as soon as respite care ends, you'll be back with us and we'll be having good times together again", so he comes home and he's miserable, so we take him to get an IV and "I"m sorry dad, I know this sucks, but once you get this you'll feel like yourself again", then fever/UTI and we get him an antibiotic and "sorry dad, but you'll feel as good as new after getting this antibiotic", and then now he's at the hospital and it's "we're sorry we brought you here, but you'll be good as new again". I know how it is coming across to him :(

worse, the rehab folk here suggested that we might be able to send him to a temp rehab facility and my dad looked shellshocked. we are not interessted in doing that at all (we've done it - it doesn't provide lasting benefits for a guy as beat up as dad at this point), but if we did that, he'd be devastated.

I am trying to work out of this hospital and had to cancel a meeting due to frequent interruptions. my mother is hours late to relieve me.

but I'm feeling good. i don't know how my brain works sometimes.

just got a nosebleed
mom can barely walk due to a strange knee malady that cropped up last week (I've begged her to use dad's cane temporarily as she's almost fallen a few times)
none of us can really be at the hospital long tomorrow due to work or appointments. I'm trying to avoid missing more work due to this as I don't want to give my company an excuse to say I'm no longer able to do the job, but also...I'm supposed to get OT this week and need it (badly).

fun times. but we'll manage.

I WOULD teach from the hospital if there was anywhere I could work quietly and weren't any doctors to disturb me. I may even try it tomorrow and just go to the business area and come back up stairs at random times

just got a nosebleed
mom can barely walk due to a strange knee malady that cropped up last week (I've begged her to use dad's cane temporarily as she's almost fallen a few times)
none of us can really be at the hospital long tomorrow due to work or appointments. I'm trying to avoid missing more work due to this as I don't want to give my company an excuse to say I'm no longer able to do the job, but also...I'm supposed to get OT this week and need it (badly).

fun times. but we'll manage.

I WOULD teach from the hospital if there was anywhere I could work quietly and weren't any doctors to disturb me. I may even try it tomorrow and just go to the business area and come back up stairs at random times