AGING PARENTS

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

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

Speaking of falls, I recently came across foot specialist's advocacy of stability sneakers, said especially good with overpronation, where the foot turns inward, overdoing a natural attempt to maintain balance. Apparently they can be found in runner stores.

dad's UTI and constipation are gone. they recommended skilled nursing (the physical therapists). Aetna Medicare initially denied it because they said my dad is at his baseline and it won't help (he's not even remotely at his baseline, which is why we brought him the fuck in).

so...in an amazing coincidence, one of my good friends works in this hospital and got my dad's case. no idea she even worked here. she called and filled me in, and said they were going to do a peer to peer call to push through authorization. then today, called me angry saying the physician responsible for that call opted to miss it, disagreeing with the physical therapists and thinking there's no benefit. so she escalated.

so now I'm spending my Friday calling Aetna to file an expedited appeal while my dad sits in limbo over the weekend.

we're starting the convo about permanent long-term care for dad, though admittedly I don't think mom realizes how that would impact her financially. and also, lots of those facilities around here are shitholes. but the hospital said I'm going to kill myself physically if I keep doing total disability care for dad (I think that's dramatic - at the moment at least, the mental strain is much more than the physical, which is what they were talking about).

I'm not mad because I assume incompetence so I fully expected this fuck up today. I am however annoyed because I want to take a shower and I smell at the moment.

a) mental health affects physical health and b) this is probably something they say bcz a lot of non-patients are more prepared to take advice about their physical health

great to hear you have some kind of advocate on the inside.

Heh yes that's probably true.

Is it possible/feasible to get permanent long-term care at home?
Agree w sic re mental-physical.

long term home care is exceptionally expensive and medicare part b does not really cover much if anything in that regard in the US. Long term care is a huge horrible hole in coverage for the elderly in this country.

I know Medicare per se doesn't cover, wondering about Medicare Advantage and other supplemental plans, since he mentioned Aetna---not imagining it would cover all, but maybe a percentage. Still, even with the family covering all costs, mainly the wages of qualified caretakers (though offset by family members providing some care) seems like it would be more affordable than in a facility---?

There is such a thing as Long Term Care insurance. My wife and I took out policies when we were in our mid-to-late 50s. Sad to say, initiating such insurance when you are in rapidly failing health is not possible. Also, many companies that used to offer it no longer do because their initial actuarial projections were inaccurate and they backed off from taking any further risk.

More than likely we would do the form of LTC where he forfeits his Social Security and gets admitted to a facility.

But you always get the shit facilities then

working out of the hospital today as I didn't want to miss a visit from physical therapist. next to impossible to get anything done between mom's constant interruptions with questions, and people coming in.

Aetna Medicare are a bunch of useless dipshits, but I knew they would be. this morning I had to fax in a form 1696 for CMS.gov to act as dad's representative, and not surprisingly, after a lot of effort on my part, they claim they don't have it. which really means they probably use a shitty electronic fax service and that the faxes have to be manually indexed to individual accounts and it takes 24 hours or so (why? because my call center does that too, except THERE'S A WAY TO LOOK UP SAME DAY FAXES, if you're not lazy).

so I had to point out "this is an expedited appeal and you are going to hold this process up due to your antiquated fax technology? I sent it to the EXPEDITED APPEAL number! I even checked it three times and got a confirmation it sent."

they got my fax, and appeal is in progress, will have final decision made by Thursday.

we found out there's a way to get Long Term Care for dad without him forfeiting his social security - a program we had no idea existed that protects the spouse in those instances. however, we don't want to send him to an outright shithole, so we're looking into options. we think it might finally be time.

what I really *didn't* need this week is a new assignment at work that I got no time to prepare for. now working on certifying 4 instructors at a partner location, which I had only yesterday to prepare for, while I was also trying to navigate dad's care at the hospital AND finishing work I couldn't finish last week because they triple booked me.

I've never done certification before (and I'm fairly sure as usual, they incorrectly misremembered that I had and thought it'd be nbd), and we've never done it at this location before, so the process is very loose. The certification was going well and everybody was excited, and then with about an hour to go, everybody kind of switched off, I started getting a lot of techie questions rapid fire that I couldn't answer, and the demeanor changed. now I'm sitting here worried that I did something to put them off (it's probably NOT that but I have OCD/anxiety so) and that they're going to go running to my boss tonight about how ill-prepared I was (which tbh I wasn't really, half of this certification was them listening to training).

i get the impression they aren't huge fans of how this is structured but I didn't design the certification process and frankly think it's really stupid.

i just need a decision to be made on dad's goddamn skilled nursing care because it's stressing me out every day it's in limbo. we'll know by Thursday morning. yippee.

rooting for ya dude

same, Neando.

thanks buddies.

his appeal was approved :)

skilled nursing for a few weeks which buys us time to think about next options if he doesn't improve back to his previous baseline. I don't think the LTC option would be a quick approval so he probably will have to come home.

in the meantime, the facility is less than 10 minutes away from us, making visits a lot easier (hospital is 30 away)

great news for now.