• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

I Need to Adios

There's a guy here at the nursing home who is unhappy - probably many guys here who are unhappy. But this one in particular, was (apparently) suicidal. So what do they do? They let him go outside in the front of the building unattended. And guess what happened, the suicidal guy tries to hang himself from a tree. Or maybe he was trying to climb the tree, and then perhaps plummet to his death. Either way, he becomes entangled. And he's slightly injured as a result. So they called paramedics to check him out. He's okay. But somehow, because somebody wasn't doing their job, my freedom gets taken away.

New Rules

I am no longer allowed to go outside. Anywhere. Anytime. Unless, my doctor signs a note allowing me the freedom to go outdoors. But it's more convoluted than that.

So let's say I want to go outside and check out the sunrise; I've got to go to my nurse, request that I be allowed outside, then she's got to text the doctor's office staff, who take the request to my doctor, who approves my request, then sends it back to the nurse, who fills out a form stating "Howard is allowed to go outside" - the note also indicates a particular period of outside time; then (when the nurse is not busy) she brings the "pass" to me - then I need to bring the "outside" pass to the front desk receptionist, before being allowed to go … outside.

By that time I missed the sunrise. Or I miss the sunset. Or that stray cloud with the disproportionately large elephant tusk - hence, the shape that's suddenly turned into something unremarkable. Probably an inauthentic aardvark.

Needless to say, I am beyond frustrated. And probably, my being stuck inside doesn't seem all that devastating to most of you, but I'm not most people. I need to go! I need to go outside! I need to go outside as often as humanly possible! Remember, I'm the guy who was stuck in bed for seven years. Consecutively. Exclusively. Same bed. Same bedroom. Same view. The same repeated nothingness day in and day out.

I know others of you have experienced much the same (or perhaps you've experienced being bed bound for greater lengths of time). So I apologize if I sound like a big dumb crybaby. But being able to GO, and being able to get going, is my thing. It's always been my thing.

When I was a child, each morning during summer vacation I awoke ready for action. After leaving the house, I did not return until dinner time. Mostly, I did my own thing, tire treading all over the place - ending up miles away from my point of origination (via bicycle).

Those were the days.

Of course, it wasn't all Guns 'n' Roses. There were attempts to abduct me (at least three of them). Also, there were a fair amount of illicit drug purchasing opportunities. Otherwise, not a big deal. Going off and doing our own thing was something we used to do as kids. At least, I used to do that (in excess). I was the only one of my friends who disappeared in such a way.

Back to the Home of Overreaction

Where does this leave me? Well I'm moving the f*** out. I've got options. I've got offers. I've got opportunities. At least, that's what they tell me.

Here's the other thing, once I get approved for disability, I only get $25 per month (back pay). That means, $25 times nine months, if the decision is rendered while I still live in a nursing home facility.

If I move out of the nursing home facility, I will instead receive the full allotment of cash each month I do not live there. $914 if I live by myself, $700 if I move into somebody else's place.

Staring into the Teeth of the Wind

I need the money. My strongest innate desire (beyond escaping) is getting my teeth fixed. Dentures. Implants. Whatever it takes. I need to look normal again. At least my mouth needs to look normal. The rest of me, well, that'll be a work in progress.

Then again, I'm getting older. My body will continually break down.

Opportunity Knocks / Chuck Knox / Fort Knox

So here are my options at this time.

Brent - He's been my friend since 1988. And out of all the people, he's mostly stuck around since I became ill. Well, he did so initially. Disappeared for a while. And then came back. He's offered me a room in his house. He said he'd put a ramp at the front door so I can get in and out. And that's vitally important. I mean, right?

He lives about five miles away from my current location. Close enough to where I desire to live and breathe.

Option Number Two is … Rebecca - We've been friends since 1995, since I was hired on at my first corporate job. She was 18 at the time. Naive, problematic, full of zest and other energetic kinds of things.

But she lives all the way down in Chandler. That's a good 35 miles from where I am right now. Which is also, a good 35 miles away from where I want to be. However, she's got a nearly empty house by herself. And if I remember correctly, installing an entry ramp or any other access ramps won't be necessary.

Then there are Group Homes. Finding one of those nearby, and very near the bike trail, it's somewhat likely. And that would be swell. I'd really like to continue living in this exact neighborhood. Or at least nearby.

Access to the bike trail gives me additional freedom. My radius increases tremendously. And it's a lot safer, as I get to avoid the main thoroughfares. The busy streets where no one pays attention to a wheelchair.

Obviously a group home isn't ideal. I'll have a roommate. And this roommate could be a real ass****. It could be someone who stays up all night making noise, being impossibly difficult. And really, I need to sleep. I've had insomnia for the past four months, since moving in with this new roommate (again, nice guy, super noisy bed that goes up and down and up and down and up and down 30 to 40 times per day — and night).

Jailbreak

So right now I am outside illegally. I'm sitting above the on-ramp of State Route 51 near Union Hills. Meanwhile, the automobile people are eyeballing me. Occasionally smiling. Sometimes waving at me. It's because people see me all the time. I am familiar, in a sense.

In all reality, it's only a matter of time before they catch me outside, breaking the rules. And at that time I will receive a warning. And then, the time after that, I will be expelled. So I've got to make a decision … soon.

My other options include moving in with my former wife. The problem there? I cannot move in with her because she lives on the second floor in a condominium with a designer staircase that's incompatible with a power wheelchair.

So basically, I'd be stuck upstairs in bed or on the couch, both day and night.

She's offered to sell the condo and purchase another home that's wheelchair accessible, but I'm not sure how I feel about that. That's a huge commitment.

In any case, it would likely take months to execute that kind of maneuver. And I'm unsure if that's the route I should take at this juncture.

My former friend Christine lives up in the mountains. Up near Payson, to be exact. And living up in the high country right now, would be ideal, in regards to comfortable temperatures —- but…. she's an extremely dirty messy human being who smokes a billion cigarettes each day (indoors). Plus, she kind of ditched me after I became ill.

And then the final option includes moving in with a female staff member. Which, really, might be okay. They know me. I know them. Pretty much. But there could be ulterior motives in having me move in. Or perhaps interior motives! Or worse yet, locomotives!

Oh, and beyond all that (and most importantly), I do not have any money whatsoever. At least, not for the next two months.

It's also possible (and perhaps probable) that I am denied my SSI disability pay. Again. I did (finally) have my interview with Social Security, so I should probably inform you in regards to that. Shouldn't I? Perhaps the information I impart will help someone else down the line, someone going through a similar process.

Note: it's probably best that I make an entirely different blog entry on that effort.


Summation

So that's where I'm at right now. Emotionally? I'm really f***ing angry. Like the past several days, consecutively. I'm angry angry angry, playing lots of guitar (aggressively). Not socializing. Pretty much shut down.

And now I've got to sneak back inside the facility without getting busted. What time would be best? It's 6:47 a.m. right now. The next shift starts up at 7:00 a.m. and then there's another grouping of office workers who come in at 8:00 a.m. I'm at least 15 minutes away from the home base, so….

I should probably wait till 8:30, as long as it doesn't get too hot outside. Which I don't suppose it will. Heck yeah, it's only supposed to be 108° today, which is only slightly above normal. Next week we'll once again be experiencing 115°, so you know how that goes. The average high temperature for this time of year is an extremely tolerable 104°. And we've not experienced an average temperature since June.


Take care, and get outside if you can!
Howard





White on Blue

IMG_20230811_080556__01.jpg


This Mornin'

IMG_20230811_061238__01__01.jpg


Immediately After Precip

IMG_20230808_075517__01.jpg

Comments

I know you didn't ask for a vote but could you move in with Brent until you decide on the rest? I assume you'd also want to be somewhat near to your sweet Mom too. ?? Wouldn't some of those options put you too far away from her?

I wouldn't do the cigarette smoker option. That would probably be very bad for you esp where you've been improving. You don't need anything to cause a setback.

Anyway...(shrug)

Praying for you. Glad you made a jailbreak today...those pics are fab. :)

Edit: Title scared me...thought you meant "Adios" from PR. :(
 
so how does this procedure prevent you or anybody from suiciding outside? makes no sense.
its just a unnoyance, but eventually you still get out. so whats the point.

just decline the procedure, tell the nursing home chief and your doctor
1. it makes no sense
2. its against your rights
3. you weren the one who tried it.

if they have a problem with that, they should sue you. as you have options anyways, why care?
what they actually are doing is trying to push their irresponsibility and negligence over to all others so they have less work to do. but thats not your problem. they must provide the oversight.

you might also shorten your monthly pay with a notice if this practice continues you didnt get the deal you signed up earlier.
but then they will sue you as well.

i'd just ignore it and let them deal with it.
 
I second the vote for Brent, Howard. Perhaps we, the people of PR, can vet these folks, conduct extensive interviews/interrogations with them on Zoom. Anywho, you have options and that is a very good thing. I know people in this community who have absolutely nobody to call on and really no options. I’m sure you do too. Good luck with everything.
 
Howard, I'm sorry this occurred. If you go with Brent, just make sure his house isn't a pigsty and that he doesn't smoke. Also, ensure that he'll feel OK about you coming and going.

I spend at least 2-3 hrs./day out on our back porch. I'd stay longer, except for the heat. Soon, though.

You sound like you've been heading out despite the warning. It's possible they gave it everyone well, because they have to, but do know that you're out and about, just as you've always been.

Right now, I'd stay in the nursing home as long as you can. After all, it meets your needs (certainly doesn't exceed them), but you will need some care wherever you go. Don't pull the trigger just yet, you're still getting out and about.

That's the problem with so many things....actions cause reactions that may not necessarily have been taken. Good luck. Yours, Lenora
 
Well................I'd be devastated too. I would definitely be saying audios if it was me even if you do get to continue going outside. I didn't realize you even had options to live elsewhere so was happy as a lark to hear that you do. :thumbsup:
 
Having read Part I only:

What has happened is unacceptable, you are an adult person who has rights to exist as a person....who has Agency; Free Will.

ETCETERA

You must ADIOS. So that is what is going to happen. What form that takes may still be forming. But it's GONNA HAPPEN. It will happen. It is happening.

I said Adios to Part I myself, yesterday.
 
Detail:

You have to OUTWIT them.

I see you have some ideas, churning. Options. Possibilities. (I scanned)

And I am pretty sure I'm seeing this lawyer person this week, and I'm going to ask quite specifically about this.

Because you have rights, to Agency. You do have rights.
 
Hi again,

Last night I sat outside in the darkness (on the front step of this cute house where I'm staying for one more night)

. Saw stars, Moths flew past. The nighttime breeze was wonderful.

I've been semi-stuck up a staircase myself for six years and I said ADIOS.

I felt a bit more alive.

so your more alive now, and your not GOING backwards.

Your going FORWARDS.
 
I assume you'd also want to be somewhat near to your sweet Mom too. ?? Wouldn't some of those options put you too far away from her?

My female friend in Chandler would be very close to my mother. But everyone and everything I know is up in the northern portion of the metro area. Plus, I've got the "mom" situation resolved. Will detail that soon. Stress upon stress upon stressors upon more stress. But the important thing is that it's been resolved.

And once it cools off somewhat, I can resume visiting her. :)
 
just decline the procedure, tell the nursing home chief and your doctor
1. it makes no sense
2. its against your rights
3. you weren the one who tried it.

I wholeheartedly agree with you. One thing has nothing to do with the other. As you mentioned, they make reactionary blanket rules like this so they don't have to manage anything.

I think legally, they can't do anything if I leave the building and go outside. I think. I'm not really sure if they can kick me out or not. And I do not want to be on the street, suddenly. Even still, I'm going outside. I'm just waiting for early early morning before anyone realizes, or late late late, when no one's paying attention.

And really, I suppose I needed this. I needed exacting motivation to get me the heck out of here. My freedom to roam is of the utmost importance. Always has been. Always will be.
 
I know people in this community who have absolutely nobody to call on and really no options.

Right, I'm thrilled that I have options. Seemingly. Hopefully something works out. But really, it's all a matter of my physical improvement. If I hadn't improved, I would have no options. But since I can almost kind of mostly take care of myself, several doors have opened.
 
I spend at least 2-3 hrs./day out on our back porch. I'd stay longer, except for the heat. Soon, though.

I'm glad you got to go outside. I know how difficult that can be in the heat. We've been lucky as heck, the past week or so has been tolerable. Temperatures have been only slightly above normal. Although, we're supposed to melt again this weekend. Or next weekend. Sometime soon. It's hard to keep track.
 
I didn't realize you even had options to live elsewhere so was happy as a lark to hear that you do.

Yeah my friends Brent and Rebecca both offered me housing in the past month or so. Of course, I'm not sure if they were serious or not. I think they were. But sometimes it's difficult to tell. They volunteered. I didn't bring up the subject, sooooo...
 
I've been semi-stuck up a staircase myself for six years and I said ADIOS.

I felt a bit more alive.

The more I thought about it, the more I think they cannot prevent me from going outdoors. But if I do go outdoors, they are alluding to the fact that they can take action against me. Which I guess would be kicking me out. What else could they do? I guess putting me in timeout is an option.

And I'm glad you got to go hang out someplace else. A different scene. A different theater. It makes a world of difference. Take it from somebody who knows just as well.
 
The more I thought about it, the more I think they cannot prevent me from going outdoors
Your right...it's how can this be finessed.

I am wondering if there is an ombudsman specific to your facility...such a thing exists here.

Thru the county. And it's a volunteer person, but they show up and look out for patient interests and how are things going.... (here it was The Council on Aging)...it's sort of Medicare related)

(its odd when I consider people live in different states/places and services vary so much.

I think sign in and sign out seems reasonable as they need to know who is in the building. I know you understand that. Its hard to be treated like this....

There is a way.
 
I think legally, they can't do anything if I leave the building and go outside. I think. I'm not really sure if they can kick me out or not. And I do not want to be on the street, suddenly. Even still, I'm going outside. I'm just waiting for early early morning before anyone realizes, or late late late, when no one's paying attention.
if it was in germany , they cant kick you out immediately. usually if they try you would deny it and then they have to sue.. and this takes a year or so.

but yes, get out, these institutions are not human friendly.
 
Howard, I don't know if this applies to AZ but here once you enter a facility like a hospital, etc., you are not able to walk out because the insurance won't pay. That has to be taken care of first.

Most doctors will listen if you have a legitimate beef. I still think they know you go out, but it was necessary to advise all of the patients because of the suicidal man. If he had tried something in the facility, that would have been different.

I would definitely want to check out the living arrangements at both friends who have offered their homes. You may be even more trapped in them depending upon whether or not there are stairs, etc.

Freedom does have a nice ring to it....I understand you're feelings. Yours, Lenora. P.S. I once tried to escape from a hospital & that's why I know about the rules and the control they have. It made me mad.
 
It turns out everyone I could possibly temporarily move in with has complications. So it appears as though I'm heading for a group home somewhere. Somewhere near here. And yeah, that won't solve most of my problems, but at least I'll be able to have the freedom to roam around the village. At least, that's what I understand. Of course I'll confirm this straight off.

Also, I won't owe anybody anything. I'm kind of particular about owing people things.


but yes, get out, these institutions are not human friendly.

I agree. As mentioned. Nursing homes aren't human friendly. For example, my roommate wanted to get out of bed today. And generally speaking, he wants to get out of bed every day. So we pushed his "help" button at 11:15 a.m. and then waited. And waited.

I came back into the room at 1:45 p.m. so he'd already been waiting two and a half hours to get out of bed. And to be changed.

Instead of going up to the nurses station and complaining (that's never an effective tactic), I went straight to Social Services and complained.

Within an hour they finally had someone helping him. So hurry for that, right?

So it's agreed, these places are most assuredly not human friendly.

A neat trick the aides use is that they come into the room and turn off the help buttons, promising to come back soon and actually help for real. So then the resident waits a half hour, forty-five minutes, or maybe an additional hour before pushing the button again. And the aides can do this all day long. Really. Keep pushing the help button and the aides will turn off the car light and promise to help out later, when they're not so busy.



Freshly Painted Hallways -

IMG_20230813_101723.jpg
 

Blog entry information

Author
Howard
Read time
7 min read
Views
525
Comments
22
Last update

More entries in User Blogs

More entries from Howard