AGING PARENTS

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.

yep yep!

Sad update: my dad passed toward the end of May. It was inevitable obviously and I felt peace knowing he was finally at peace. I have a lot of things to say about this but nothing I am willing to share on a public message board.

aw I'm very sorry to hear that, and no need to expand further beyond what you're comfortable with.

<3

thank you. the service will be later this summer, looming over my head and sucking up all the air in the room until then.

So sorry to hear that, LL. You have my deepest condolences.

My condolences, LL. It's always hard to lose those we love.

my condolences, LL.

I know Medicare per se doesn't cover, wondering about Medicare Advantage and other supplemental plans

that's what I meant by medicare part b actually

Sorry for your loss, LL.

Sad update: my dad passed toward the end of May. It was inevitable obviously and I felt peace knowing he was finally at peace. I have a lot of things to say about this but nothing I am willing to share on a public message board.

Sending heartfelt condolences, LL. May his memory always be a blessing.

Yes, totally feeling relating to your whole post, LL, my condolences as well.

thanks folks. father's day has typically been fraught for me and this one feels extra hard. I am trying to remember that i have ok days as well as bad days and to give myself the freedom to feel how i feel.

so sorry, LL, best wishes to you and yours

Hope you get to feel from peace soon.

father's day has typically been fraught for me and this one feels extra hard.

you're not alone. several of the worst days of my entire life fell on father's day. this will be my first one since my daughter died. not sure how I'll be feeling tbh.

O shit Aimless, did not know about that! So sorry.

I remember hearing you talk about your daughter Aimless, and very sorry you have to go through that this year :(

dad has pneumonia. because of course he does. and he probably had it for days and the hospital didn't notice as they were just waiting for approval to transfer him and not checking for these things.

already on antibiotics. this skilled nursing place is on it.

My mom went on a river cruise in Germany and Austria this week and didn't catch Covid, so that's good news. She'll be home tomorrow.