AGING PARENTS

really starting to worry about my ability to work during our busiest time of year with mom semi-sidelined from caretaking dad until probably late August. (she'll still be able to do things, but all lifting = me and anything intensive).

if the home health care is situated by then, though...that'll be a godsend. Florida DCF said we've done all we need to, for the moment, with the application process.

Neanderthal, my total respect and admiration for what you do for your folks. My mom died on Friday, after two weeks in home hospice care, so it’s almost a relief that we were spared months of seeing her as a husk of her normal self.

i'm sorry to hear about your mom, suzy <3

I'm just at my wit's end right now. every time things look up, we get knocked down.

DCF denied our Medicaid LTC application, and we have no idea why. They claim we did not submit documentation of unearned income, which I most specifically did - over 100 pages worth, both uploaded and via fax. Their website reflects everything I submitted. Also, our phone hearing was on 7/15, and their letter on 7/1 told us we would have ten days from the hearing date to submit all documentation. It's been four days, and they denied us. Wouldn't even tell us what specifically was missing, just wrote as if we submitted nothing.

Also, they seem to have mushed two disparate applications together. Unfortunately, my mom was trying to submit a Food Stamps and Medicare Access application back in May, which we realized after he probably didn't qualify for. For some reason ,they seem to have combined this application with the one I submitted in June for LTC. One example is they denied my mother for LTC, and she never applied for it - you can see in the application where it clearly states No next to her for LTC, and Yes next to Dad.

We called and have been waiting on the phone for an hour - they wouldn't talk to me because I'm not dad's representative.

Meanwhile, I complained to OSHA and AHCA for my dad's long-term care facility's handling of dad's roommate's COVID case. we don't want to visit dad right now to avoid risking our own exposure (so far, we are both negative). Mom has tried calling them all day, and left a message for the social worker. Nobody is answering.

This type of existence in 2022 is agonizing. People don't do their jobs, and I have to basically escalate to government agencies to force their hands. I'm starting to lose hope.

probably going to have to have an attorney assist with the next application attempt for DCF. I'm hoping we don't lose our place on the wait list. they also notified the Elder Affairs of the denial.

Is this really how it goes? if your documentation is missing something or isn't what they're looking for, they don't just tell you and let you submit it, they just blanket deny you?

there's just no joy for us right now.

So sorry! If you're not your Dad's representative, who is?? Might be good to contact an attorney right now, re time factor and getting past feelings of helplessness to some extent.

in the now almost two hours we've been on hold, I've managed to get zero work done, but I have managed to email/fax several officers on Florida DCF begging someone to answer our questions so we know what to do. the letter is so confusing.

we're giving up in 15 minutes and going to call at 8 am.

xpost Mom is. she's next to me and I offered to handle the call together.

we've discussed going to attorney next, definitely. I have Group Legal with my company, and we have already sought legal for dad's injury so we will look into that too. the three of us are just tired, it's constant effort effort effort.

I wish we had brought dad home instead of sending him to this damn facility.

thx dow!

means testing is such bullshit. I’m really sorry, Neanderthal.

that it is. thanks brimstead.

the killer is I know he qualifies, but they are completely inept at this place. they even spelled my mother's name wrong in the original letter even though it was correct on the application. can nobody cut and paste anymore?

i'm sorry your mom has passed, suzy. i totally get what you mean about the almost relief. my mom was losing more and more of herself in her last few years and it never got too bad, but when a blood clot* took her suddenly there was -- in addition to the shock and grief -- at least the consolation that she didn't have to keep fading away by inches.

(probably a blood clot. dad wasn't real communicative. my brothers and i just got a group text out of the blue. "Your mother died today at St. Whoever's ER. It wasn't COVID. We can grieve later when the pandemic subsides." cool, dad. thanks.)

Neanderthal, holy hell. i don't even know how to respond and i'm just reading your posts, i can't begin to imagine the stress of it being your actual life! is there any room in the budget for a burly nursing aide to come help out sometimes? any more family members to shake out of the family tree? i really hope things get better for you and your folks. <3

no more family members, but things are somewhat settling down. I'm still not convinced that dad won't eventually test positive, but his roommate is now in the hospital (presumably for COVID). no idea if he was vaccinated. as of yesterday, dad was still testing negative.

mom was only going to take him his clothes and pop in and out, but once she saw the roommate was not there, she decided to stay longer (masked and gloved of course). I warned her not to be too lackadaisical as there's a chance dad has it and we don't know yet, and she's the one who's concerned about getting it.

assuming dad's next test is a negative, I may go visit him again. I feel terrible not being there but it's not for invalid reasons. even if dad hadn't had covid, work kicked my ass up and down this week, and the doors shut at 6 pm. so I probably couldn't have gone.

kinda just wanna bring him home, once we're sure he's in the clear, esp now with the roommate not in the room. (obv I hope the roommate comes out of it ok).

thanks cat btw

my self-hating brain, however, is taking the positive news that mom saw dad, and he was so thrilled to see her, and knowing my brother has seen dad, and I haven't seen dad since Sunday, to read as "you're the only one who hasn't seen him over a widdle iddie biddie COVID", and I feel guilty as hell.

but I reminded myself I was the one who made the most trips to visit prior ti this week

I get the brain thing, but you're comparing yourself to a non-existent ideal versus the average child or more common in my experience, the sibling that lets the other children carry the weight. This thread has been an impressive diary of your care, man.

alpaca otm! at a bare minimum you deserve a "#1 Favorite Son" coffee mug to flaunt at your brother. i've probably said it before, and so have many others, but it's stone truth: you are an amazing dude & your parents are so incredibly lucky to have you.

There's been a multi-day heat wave in our state (I know that only narrows it down to about 49 of 'em), so I called my mom last night and she laughed and said, "Checking in on the elderly, huh?"

Wow, this is deeply fucked — Two decades of Alzheimer's research may be based on deliberate fraud that has cost millions of lives. (Here's the other article cited in the piece.)

what the absolute fuck

so wait is it normal for massive swathes of disease research to be based on a single unreplicated paper or

The impact is wildly exaggerated - I've worked in Alzheimer's for 20 years and had never even heard of the suspect paper. It's part of a range of somewhat-reliable evidence around amyloid which everyone with any sense is deeply skeptical about. There was definitely research funded on the basis of this fraud, and the money was wasted and the company tried to develop a therapeutic based on false findings, which unsurprisingly failed, and the shareholders were misled and lost their stakes. There is a lot of wasted money and time in Alzheimer's research, and a lot of the data are crap, but the idea that one faked paper cost "millions of lives" and 20 years of research was based on it, pure bullshit, well maybe one lab did but the rest of us were following up our own ideas and not influenced by it. Shitty behaviour, massive press beatup, cast shade on all Alzheimer's research, what a helpful outcome.

so wait is it normal for massive swathes of disease research to be based on a single unreplicated paper

That was my question. Thanks mattkkk for the context.

I guess I kicked back pretty hard against the exaggeration but there were other labs influenced by the finding. At the time it was yet-another "finally, the key to Alzheimer's" and I wasn't really working in the field during that period, so it was a case of shrug, wait and see. However I'm surprised to see its massive citation count, >2300 by some estimates, which speaks to a lot more influence than I had realised.
The story, and a balanced take on the paper's harm as well as details of the fraud, are well documented in this piece from Science:
https://www.science.org/content/article/potential-fabrication-research-images-threatens-key-theory-alzheimers-disease

this DCF thing is a nightmare. I've now written to my Florida State representative about the issue, asking for help. Instead of long waits on hold at DCF, now that's not even an option. You get a canned message saying call volume is too high, asks you to call back later, and it clicks and hangs up.

The FAX MACHINE isn't even working! I faxed documentation two mere weeks ago. Since last week, all attempts to fax have failed, citing 'poor phone quality'.

I filed a complaint with the Inspector General, but they will probably close it as that's more for wrongdoing. I'm hoping by opening that door they'll forward it to someone else. I accused them of abdicating their duties and closing off all means of communication.

I've also emailed/faxed several officers on DCF without response.

the only other solution I can think of is just to apply again, but what's the point if they're just going to tell us we didn't send in what we sent in.

so defeated. but not giving up.

I'm sure they'll do the usual shit, accusing us of trying to 'cut the line'. lol

‘Maladministration’ is a useful word for your arsenal.

oh i like that!

dad is coming home today. so fucking thrilled. :)

been long overdue, no more half hour drives back and forth and worrying that the nurses would do something stupid again. plus, well, i've missed having him here.

HE'S HOME

Congrats!

all attempts at escalation for the Medicaid application bullshit paid the fuck off. I finally got in contact with someone there who explained what was 'missing' from the application, which could be easily rectified in the form of a simple letter.

I sent said letter, they have now confirmed the Medicaid side of the application is complete and approved, and now only Form 2515 from Senior Resource Alliance is required and we're done, and SRA just visited our house yesterday and said they would take care of that part.

Good stuff. Hopefully on the home stretch now.

in the interim, our process for taking care of dad is pretty smooth now, as I am doing 95% of everything, and mom changes dad on the bed (with me holding him in place).

but mom is once again resuming that thing she does of saying rude things to dad that make him feel self-conscious/bad. "oh, you stink - why do you still stink?". cos he can't fucking take a shower by himself, mom, we haven't cloth bathed him today, and also he just took a shit. and you were already getting worried about the fact that he hadn't gone in days - now you're annoyed that he did go? well maybe he holds it cos you make him feel terrible when you clean him up after. we've told her this, she makes promises, then relapses.

"ew, that's gross, Tony" when his nose runs, like he can control it. I told her today to quit making him feel bad and she barked at me like I was 15 again

it's going to stop being a polite reminder if it continues. this isn't like before - I'm doing almost everything now. dad doesn't move from one location to another without me physically moving him, and I get him out of and put him into bed. I'm not treating him that way. if anything, I've just been enjoying the fuck out of our time together after that nightmare he spent in assisted living.

anywho, he got a CT Scan today to look at how his C2 fracture is healing, so fingers crossed! :)

(I mean, these are all things I've said to her face, but the calm, Mr Van Driessen way I've been saying it may need to be a little more vinegar-y)

Whenever I’m trying to navigate some fucked-up maladministered bullshit, I think about people who don’t know how to use computers, or they don’t speak english, and i’m aghast.

My family recently moved near my mother-in-law because she lives alone and had a stroke with only mild after effects. But the right job opened up for my wife and it made sense to move and we knew she would eventually need more help. She has a neuro-psych evaluation soon so we’ll have a better sense of what is going on.

Neanderthal, you’re a saint. Your parents are very lucky.

Dad somehow fell out of his chair at the breakfast table. His balance has been off. Back to the hospital we go.

I'm relatively calm, it doesn't help to assume the worst.

He's ok and coming home.

Mom is trying my patience. I've had moments lately where I came close to screaming at her. The constant negativity and berating dad needs to stop or my dad's temper is going to come out of me.

It'd be one thing if I wasn't helping much but literally I'm the one doing all the physical labor with dad and making me anxious while I'm holding a 175 pound man isn't a good thing

Can you make a hard and fast rule with her, that when you say "stop talking now" she actually does it? When you're both calm and not physically dealing with your dad, tell her it's making things unsafe so you will mean it when you say it and she'll need to comply?

that's a good idea actually. thanks!

I hope it works and makes things a bit easier for you.

MEDICAID APPLICATION IS APPROVED, IT'S FINALLY DONE!!!!!! they just sent a letter to the Senior Resource Alliance confirming.

took way more effort than should have been, but I shook the right tree and got a personal contact and that made the process much easier. she singlehandedly fixed the errors the original processors made in denying us.

anyone in the US have a parent with a fall alert system and if so which did you use and do you like it? My mom is going through her latest round of chemo (she's terminal); I got to her house (I live out of state) last week and she looked like she'd been in a car crash; she fell in her kitchen and smashed her head into the stove top and didn't bother to tell me about it until I got there.

I can't help with the question but v sorry to hear about your mom. Good luck.

I've now talked to three other people about my age and been disturbed to find out how much of a trend it is for these elders to hide shit from their kids. falls, car accidents, strokes.

it's absolutely terrifying. many elders don't have the care they need, and they know that level of care would burden their children, so they hide it all. i'm sorry to hear about your mom. we haven't yet tried one of those fall alert systems but I wonder if quincie (summoning you!) knows!?

(also quincie I hope you are doing alright re: your recent health concerns as well)

I sensed the summon! And I am doing well, thank you. My boobs are now gone and hopefully all of the cancer has thus been evicted.

Re: fall alert systems. I do not have first-hand experience with a particular system, but I have referred clients to shopping guides for medical alert systems. IIRC (I am not at work so don’t have that info at my fingertips), Bay Alarm gets consistently good ratings. They may have a fall monitor option. Cameras are increasing popular. Safety check phone calls (which trigger calls to emergency contacts if not picked up) are another option. I think Apple watches offer a fall alert option. My ilx webmail doesn’t work but perhaps Neander could make an email connect to me if you’d like to be in touch off board.

Also if you mom is not already enrolled in hospice, I would strongly strongly recommend; that could get more nursing visits onboard to help with safety and patching up injuries without having to do the ER thing.

Actually Neanderthal I think a talk about hospice would not be premature for your dad. The repeated ER to hospital/rehab cycle is a red flag.

^ otm. when you are a caregiver in the midst of dealing with serial crises it is hard to free up the attention to recognize that red flag and even harder to process it, but hospice is an option worth considering.

We're starting to have discussions re: hospice for my mom now. Before we started talking, I was under the assumption that hospice was strictly for patients whose death was imminent, but I've learned that that's not the case -- as quincie says, it can help with more nurse/social worker visits in the short- and medium-term.

Re: fall alerts, a lot of assisted living/memory care places will have a facility-wide electronic system in place, and in my mom's case it's worked very well. Don't have experience with anything in-home.