Paying Rent at the Nursing Home

October 22nd, 2021

Don't Go Fund Me

The fine people who run the Arizona state healthcare system recently sent me a letter indicating my need to pay $180.90 per month (in order to continue residing in my luxury suite). This is based upon my income. Income? No, I do not have any. So I spoke with D.J. (She's the Minister of Finance here). And she's baffled, too. Perhaps even befuddled. Beguiled? Nope. So DJ tells me to call "this number" - hint: she's pointing at my paperwork for emphasis

After she departs, I call "this" number. And after being rerouted and redirected I make First Contact.

Her name is Gina-Tina. I'm not sure which, or even if it's both, so I take the easy way out by choosing to hyphenate her.

Gina-Tina's initial phone behavior leads me to believe she's a medical marijuana advocate, very recently advocating… during her lunch break. Right off the bat, she asks me how I earn my income. So I admit to her that I haven't been gainfully employed since 2012, because I am disabled.. except that I'm not really disabled, because I do not have a diagnosis, therefore, I do not receive disability. She then tells me there's nothing she can do, except recommend that I apply for unemployment.

Unemployment! Huh? After nine years?

Briefly reflecting, Tina-Gina admits that a successful employment claim is somewhat unlikely. She says I need to call social security, regarding my income. So I tell her again, that I do not work, nor do I receive income. She asks me if I am absolutely sure.

"It says here that you received $300."

I did not.

Gina-Tina states that according to the paperwork, ANGIE paid me $300 in 2019. Yes, it's in all CAPS, on my form and Tina-Gina's.

She asks if that's my wife's name. It isn't (because that's a pretend name I used here, to protect her sovereignty… but it also isn't, because we are legally no longer married.. which means that I do not have a wife).

"That doesn't make sense, are you saying that because she paid me $300 one time, back in 2019 (she didn't), I have to pay $180.90 per month for an indeterminate period of time in order to make up the difference?"

That's right about when Gina-Tina's mind short circuited. Dead silence on her end. Ceaseless noise and innumerable distractions on mine.

"Is she perhaps giving you $300 monthly?"

I insist that ANGIE isn't paying me squat. And if she was paying me that absurdly large sum, a whopping $300 per month, I'd have gotten my laptop speakers repaired long ago (they failed back in 2017). Or heck, why not fix the actual laptop (cover broke in 2019, rendering it inoperable). Beyond that...

"I haven't been out of bed since 2015. I can barely move. Even if I had income, what would I purchase? I don't wear clothes. I don't gamble. I can't even eat no more."

By now, my roommate Jeff is laughing hysterically.

Gina-Tina responds, "Are you saying you haven't had a job since 2015? Is your wife disabled, too? How do you earn money? How do you survive? This doesn't make sense."

Ugh! I want to be clever. I also wish to humor my roommate, but this isn't the time nor the place.

"I think you need to speak to my supervisor," I tell her, halfway assuming her internal gears have ground to a halt.

Eventually she transfers me to Daniel B's extension. I leave a detailed message. As this is NOT a life threatening emergency, I do not hang up, and call 9-1-1.

Daniel B. never calls me back.

Faster Recovery

[although positive in nature, this subsection is probably all kinds of boring - SKIP if you feel like skipping]

Want some good news? Sure you do. My recovery times after having completed my Bedside Commode Olympic Event have decreased (generally). My post-exertion ritual today resolved as follows:

Initial - 45-minutes of not physically moving while taking intermittent deep breaths three minutes apart.

The Worsening - one hour of "no more deep breathing" .. short shallow breaths instead.. not easy to catch my breath. General achiness all over, but not severe. Try unsuccessfully to nap.

Improving - breathing mostly normal, achy and tired.. take a couple brief naps. Merely feel unwell and hungover now (past two hours). No poisoning today.

Nice News

The best news is that my heart rate dropped back to normal almost immediately after exerting. Last week it was often stuck in an elevated range (between 95-100bpm) for up to six hours post-exertion (anything measuring at or above 91bpm also means random disconcerting ectopic heartbeats). The elevated heart rate also tires me out more quickly, as well. Heart unnecessarily pumping..

Almost nearly exciting positive stuff here, right?


"I'm sorry, Neal.., Neal..., Neal… " someone is poking at my foot. It's damned irritating.

"Why are you doing this to me, I need to sleep?" My disembodied voice says.

"Vitals," her voice responds.

Of course. Why not?

"I don't have any. Come back later," I insist.

Then I see the time on the crooked wall clock. It's 3:36 in the morning. The woman with the voice sees me seeing the clock.

"Because your unit tested positive for Covid, we have to do vitals every four hours. New precaution."

I suggest that not allowing us to sleep will kill us faster than the damn virus. She chuckles.

I fall back asleep. Eventually. Then two hours and fifty-one minutes later, another CNA is nudging me.

"Good morning, time for your vitals."

"Fine. I'm up. I'm up. I give up. I give in. Oh... and you needn't bother. I'm 106 over 67," I suggest out loud. But instead, I measure 107 over 66. She's needlessly impressed.

Video Call Girl, Interrupted

I had an excuse, and I used it. I asked my wife to call me sometime over the weekend, as I wanted/needed to discuss my mysterious monthly income issue.. thinking she might offer some context or clues.

Hours later she called me, in the midst of sounding busily engaged. Which she was. Her youngest grandchild was in the house, scheduled to spend the weekend. He's the one who violently yanked out my feeding tube once upon a time. He's also the one who the daughter-in-law is constantly trying to pawn off on any and all takers. At three years old, he's a human buzzsaw. A whirlwind of destruction. A veritable EF-5 tornado.

I ask to do a video call, so that's what we do. The kid greets me, straight off. Then suddenly he's banging on my old snare drum. No. I cannot escape the noise. But I enjoy watching him bounce back and forth, to and fro, like a pinball.

I see my wife's face from all angles, and I hear her words. That's the important thing. I get to experience her for a short time, as we discuss my mysterious income. I also get the grand tour of our home (as she's chasing him around). I hadn't been out there for several years.

The few pieces of artwork remain unchanged. The computer desk in the corner is arranged as it's always been. An unfamiliar couch? Yes. A new kitty tower? Yes, that too. Not much else. Sparse. No knickknacks cluttering. Mostly bare walls. And a crowded bookshelf.

The child is wearing her down. Anyway, she has to go feed him. I say goodbye. My screen fades to black.


CNA said I should listen to Joe Dispensa.


I don't know how much you have pursued getting on Disability in the past but i would get a social security disability representative. Don't try to do it on your own. They don't charge up front. they get payed a percentage of whatever retroactive pay you get once you get approved. (not from your monthly disability). I just don't see how you could get denied Disability. This is absurd! I know, I know, it's another thing that you have to put on your to do list. Right now, if you're not getting Disability you should qualify for SSI at the very least.

Gina- Tina and the $300 BS is so over the top ridiculous.

I can't believe how much you have to advocate for yourself. Someone needs to step the f up already. :grumpy:
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Well, Howard, I can't offer much here....except why don't you suggest that your wife call when "the child" is fast asleep. It may be easier for all of you. can have her undivided attention. She may really have to think about that income thing....I do, too, especially any govt. letter containing such info. Next they'll be hitting you up for Income Tax.

Lord, and your poor wife gets to spend her time off with this child? I'm sure he isn't bad...for his age, but it does get awfully tiring. Just hearing about it. See, one should be young when undertaking this task, or at least younger than 50. At least to be the mother of one that age.

At 74 I don't think we'd be able to handle babies or toddlers these days (Rod's 77) it was hard enough, but enjoyable at least, when we were in our 50's. I can't imagine just starting at that point....perhaps there should be a moral law, the same as anyone under 18 having a child. Mid 20's....generally best, then you're usually OK to be a grandparent too.

Anyway, did she know anything about your rip-off of a state financial group? I wonder what would happen if you ignored it? If my brother's anything to go by, you'll end up owing a very large amount of money and a payment plan will have to be implemented. I wouldn't suggest going that route....of course We were the ones (Rod, that is) stuck with the fallout from that one. Meanwhile, my brother still just throws all of his mail in the garbage. Rod's a very patient person....thank goodness that one of us is.

Where you are isn't the only place where crazy things go on. I'm sure my daughters will have a dose of my brand of crazy before I go. Keep smiling....or mooning, as the case may be. Yours, Lenora.
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There may be something to gain, from checking in with Dispensa. (and when certain things come up...finger pointing....perhaps check it out)

You need to be on disability, and this needs to happen. Regardless of the 180$ thing, which is obviously ridiculous.

So I hope advice like Tammy provided can be pursued! I know- another thing to pursue, solve, ponder.

Well, your a Puzzle Solver, too!

Diagnosis. You can't eat food or drink water. Good Grief. I think the neurologist should be able to come up with something here.

Something here is diagnosable, maybe its not the ME. Of course, PEM is one of our most infuriating punishments.

(and I was merely thinking, about myself (center of my universe). I made 22 trips to the toilet by noon on Carpet Man Day. The bladder, the cystitis, the IBS. Sleep disrupted. So your trip to the commode would be 22 trips, if we pulled a patient switch.)

Mooji is cool. (plenty on You Tube) Leave the ego outside the door, maybe have coffee with Mr. Beelzebub. The audience are new age types, and sometimes I'll tune in just to listen to his responses to the very odd questions, he gets asked by some young millennial in a sarong.

BTW- sarong is a great clothing style of men who aren't really otherwise into clothing..

(stuff men don't know-your at the beach in Hawaii and some young man shows up in just a sarong.):love:
RE: rapid onset PEM...and thats great, it subsided so rapidly- improvements, subtle improvements!

I get a similar thing related to a phone call, a chat , or conversations.

I"l enter a state of zombie-coma. I literally almost pass out in my chair after. And sometimes it does not result in the prolonged PEM. Its just this sort of massive really SLEEPY type thing. and subsides after a few hours of regrouping.
It seems all challenges can be solved, in one just Querries the internet, skillfully enough.

Here is a helpful list of Hidden Disabilities!~

What Are Some Common Hidden Disabilities?
  • Psychiatric Disabilities—Examples include major depression, bipolar disorder, schizophrenia and anxiety disorders, post-traumatic stress disorder, etc.
  • Traumatic Brain Injury.
  • Epilepsy.
  • Diabetes.
  • Chronic Fatigue Syndrome.
  • Cystic Fibrosis.
So Tom Hanks spent how much time losing weight to be the star in Philadelphia? So then it would be Hidden?
Disability Response @Tammy and others :)

Thank you for the suggestions. I already went through the disability process a few years ago.. with the assistance of a representative (as you mentioned/suggested). The government denied me because A) no formal diagnosis B) no/not enough supporting medical records -

By the time I was officially feeling disabled (too ill to function, 2015), I either had no health insurance, or we had no money to pay for medical transport, doctors, etc. At that point, I only left my bed in emergency situations.. to go to the hospital (from 2015-2019). And because I was unable to communicate early on (no sound, light, conversation, etc.) I had no involvement in the filing for disability.. and my wife did the best she could (overwhelmed/overburdened) filling out the paperwork. But in retrospect, she didn't understand a few things, and also wasn't able to attain some of the few medical records that may have been helpful. Unfortunately, I was very much unable to communicate anything to her at the time. I didn't get involved at all until I was more clear headed, probably late 2018 (I had a lot of help and guidance here, at the time).

The formal appeal was also denied. The only other option is to pay an attorney out of pocket. Or receive an approved diagnosis. And really, if I end up staying in nursing homes until the end of my days, none of this matters. I'd still only qualify for a bottom end facility.

And yes, advocating for myself is obviously very necessary, but at least I can handle this now (with help and advice). And I am extremely grateful that I am "better" now.

But just imagine the people who are less fortunate than I. Back when I couldn't fully communicate, very bad things happened.. so I get it.

I'm okay now. I can think through things.
When I first realized you don't have a diagnosis, I was stunned. It seems like not many of us have one. I sure don't, and I don't want to bring it up with Doc and get the brush-off. They just have to give you a diagnosis there. It has to be obvious to them that you are unable to work (although I know you'll be rich one day from your writing;)).

Thanks again for sharing your experiences with us. I truly look forward to it every day. Although I feel bad about the unnecessary suffering from fake barnyard animal noises, Rocky Horror, Vitals, lack of sleep, etc.
Me trying to be unnecessarily philosophical ..


I suspect that by default, there are times when everybody believes their own suffering or their particular situation is worse than anybody else's. Of course, being egocentric is necessary for our survival as individual human beings, and as a species. The key is not getting unnecessarily caught up in the suffering. It's a mental construct. We are not indebted to its maintenance. This illness is what we make of it, defined by our terms.

Now, as it involves emotions .. I remain a prisoner of my own desires. Logic thrown out the window.

Everyone suffers in their own way. I merely bring mine to light with words. A form of releasing and letting go. Therapeutic. And one of the (only) benefits from having been very severely ill (previously), is that anything physically going on right now pales in comparison (to back then). If I can make it through that…

Lord, and your poor wife gets to spend her time off with this child? I'm sure he isn't bad...for his age, but it does get awfully tiring.
The child is exceedingly difficult. Boardering on brilliant (at least compared to the other grandchildren), he gets into and explores all of everything. And there isn't a daycare that can contain him. Literally. He's been removed from several. And is sent home a few times each week.

But yes, this boy exhausts my wife, yet the parents do not understand. Or pretend not to.

@Rufous McKinney

I believe the $180.90 rental fee will be resolved. It just has to be. They can come and inspect me, as they wish. :)

Diagnosis - it seems as if no doctors want to be on the hook regarding a diagnosis. Perhaps they have a yearly allotment.

could the person who arranged your stay at the care home help you with the application for benefits?
I arranged for my own stay, so it would be up to me to get something in the works. Perhaps I should talk to someone here. Maybe it's something they can orchestrate. My roommate will be approved shortly, because he cannot walk or get out of bed. Hmmm… sound familiar? :)

Although I feel bad about the unnecessary suffering from fake barnyard animal noises, Rocky Horror, Vitals, lack of sleep, etc.

Thanks. I had a talk with Jeff today. Lights out at night unless it's an emergency. Sound? I can deal with.. mostly. I still have to remember to opt out of the vitals each night… if we are even allowed to do so. Now I must wait to do my nightly feeding tube related tasks. Both graveyard shift nurses are adept.
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Perhaps I should talk to someone here. Maybe it's something they can orchestrate. My roommate will be approved shortly, because he cannot walk or get out of bed. Hmmm… sound familiar?
That's what I was thinking too. Maybe being there could improve your chances of getting on SSI. I think you should try again but hire someone who sounds like they know what they're talking about.

I think you should call Jonathan Ginsberg in GA. He handles other states as well. I think this is his Contact Us page:

At least he might be able to give you some good advice. If you want you can watch some of his videos on YT as well.

Please consider trying for it one more time.
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@Howard.....I was thinking, but don't recall that this question was ever asked: Have you requested that a social worker visit you? This is important b/c she may be able to start the SSDI and/or Unemployment in place for you. She probably won't have all of the answers, but should be able to get them for you.

Also, why wasn't Unemployment applied for at the time? It's good to give her as much info as possible at the time of your meeting. You're in a perfect place to get letters from doctors on the premises.

Exactly what does the state provide, e.g. PT 2 times a week in your home? Exercises that a bedbound patient can do? Wheelchair, but don't go for the deluxe model...heard of too many people who can't handle them & end up in accidents. Things of this nature.

Ask her for copies of all letters sent, requests, etc., and keep them in a special file. The more proper documentation you have when applying for these matters, the better...thus letters from doctors and even photos showing your feeding tube.

How are dental matters proceeding?

How was Jeff after your conversation with him yesterday concerning his nocturnal activities? (I do realize that he isn't a racoon). Hopefully things were quieter around there last evening. Any other thoughts from other members? Yours, Lenora.
The child is exceedingly difficult. Boardering on brilliant (
I look out the window at the three downstairs- bursting out. Four, Three and One.

They intend to have three more.

Its total chaos down there.

Mine comes in one month, it seems she runs everywhere.

Thanks. I had a talk with Jeff today. Lights out at night unless it's an emergency. Sound? I can deal with.. mostly.
Nice one.

Make a sign: don't wake up this one at 3:30 am. Signed HOWARD.

Diagnosis - it seems as if no doctors want to be on the hook regarding a diagnosis. Perhaps they have a yearly allotment.
so gastroperesis is not a diagnosis? It seems like a Thing. I think a Viking would in fact notice that.
I believe the $180.90 rental fee will be resolved. It just has to be. They can come and inspect me, as they wish. :)
reminds me of checking my work voicemail one Friday afternoon, its the IRS and my wages are being garnished.


that was a little stressful. Tied to some event that transpired about 20 years prior, while I'm home penniless with my Baby, five cents in my wallet.

My husband's employer mis reported his self employed income, and what do I know about any of that, nothing. Then he dies. (the employer)

I'll be homeless next week, and then, I'll be fired.

We will be living in one of the cars that dont run.

uh oh. Well that was an awkward weekend. I found an IRS agent on Monday, and ran thru the math. I guess they don't really want you to become homeless and fired.

They backed off. Of course they got every dime for decades.

Now they take his sS check for the 1962 student loan. I was nine years old. I never heard of student loans.

those never die.
Curious (a trait I suffer from)....I read this about the diagnosis Gastroperesis, and disability claims.

(I need to be concerned myself, that mine may be triggered by blood sugar issues. Uh Oh. Like one afternoon, I just lost it and lost all of breakfast. It was supremely freaky as its feels horrible, this possible insulin poisoning. That has caused a PTSD like response here, to sudden nausea.

Really awful.)

And one of the (only) benefits from having been very severely ill (previously), is that anything physically going on right now pales in comparison (to back then). If I can make it through that…
I get to recall Trip 1 and Trip 2. Trip 1 (Feb 2018) I'm merely low energy, watching it, taking breaks not walking very far. But I did 14 blocks and an hour in the Mercado. I reached an actual forest, and for 5 hours, I did not feel "sick" (because its so beautiful and your so happy).

Trip 2, three months of hell 2019. All symptoms much much worse, POTSy, TACHY, and me, around 5 pm each day, considering giving it up. Just give it up.

Blindfolded, in the Sierra Madres surrounded by wildflowers. (sitting in the car)

So: How will Trip 3 go? (It might be permanent, meaning, I leave here this one last time and never return).

that is my plan- to eventually never return. To simply toss myself out into the complete unknown.

Years ago, my father told me about the Old Lady up the Staircase. It seems this was his own grandmother. So is that it? That one line? The Old Lady up the Staircase?

Not a photo. Not another word. Not a memory?
I don't think this theme has really been well served yet, in the comedy/sit com category.

Howard could start aggregating ideas for Hollywood.

Oh- we could pretend to come up with who would star in the various rollsrolls


Gina-Tina should try out and already has a stage name.

I'll beg you include, in Episode 19, the call I made, to try to get my pill covered. Wherein, some medical expert whose salary is paid, tells me to get my doctor to prescribe a particular pill with a fancy name (but its Morphine), Then I could get my low dose LDN for free (they put it in the morphine so you won't overdose).

...Dear Doctor, I would like morphine please, even tho I only get painkillers peddled by the likes of Gina-Tina.
@Judee and friends

Thanks. After the first time you apply for disability, each additional effort is paid for out of pocket (hiring a representative). But I shall figure out how to talk to the folks here.. see if they can come up with anything.. find a way to put me through the process (assuming it's financially beneficial for them to do so).

I need to make a list of tasks to be completed.

As I am visually attuned, I do not easily remember things I am supposed to be doing unless I see the words immediately in front of my face. Reminders in print. Over and over again.

But I am unable to do that here, so I just focus on relaxing my muscles, some writing, and letting the incessant noise pass through me. :)

Anyway, I'm not up to investing the time or the effort .. and especially have no intention of reliving year's worth of failed attempts and everything else involved with this illness (from early on during the excess awfulness). Too much trauma.

For me it's, diagnosis or bust.


I received a mutually agreed upon severance package at the end of my previous employment.. then headed out to the Mojave Desert, and .. it didn't help. Nope. It was suggested that job stress was making me ill. It wasn't.

The dentist is temporarily on the backburner. I know what I need to do there. Or, procrastination.

Jeff is more agreeable of late. Dark night.

@Rufous McKinney My gastroparesis is not debilitating. It once was, and nearly killed me. But I've got the tube feed going.


Sometimes those Gina-Tina conversations are difficult to have and to hold. The humor is often missed or ignored (as they cannot afford to assume "humor" and risk losing their jobs. Plus, my intent is not to be cruel, or too unusual.. ideally :))
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@Rufous McKinney My gastroparesis is not debilitating. It once was, and nearly killed me. But I've got the tube feed going.
40 hours of Phone Room. If your brain and mouth work, then you could be employed by my insurer. Your way better informed than the nice gal who called me.

Or my past employer (today, I just called a living person at my last employer and they answered the phone. 3.75 years ago- I left retired and evaporated, never to be seen again, until TODAY.

40 hours of Phone Room. If your brain and mouth work, then you could be employed by my insurer. Your way better informed than the nice gal who called me.
actually, could you apply for a CIVIC job, Howard.

our California's Unemployment office Phone Room is having serious issues, and many are suffering. I just read.

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