Importing and Exporting Germs

I've written five full blog entries (ready for posting) in the past six days. But for a multitude of reasons, I've decided against actually posting the darned things. Why? Because my purpose in doing so is unclear. And also, I do not wish to unnecessarily hurt others, or stress others.

Additionally, I don't know what (or if) I am thinking half the time. Most here are either incapable and unlikely to read 2,000 words worth of Howard's nursing home life (in the first place). I think everybody is well aware of that which is going on in my life, what's going on here. At least generally speaking.

It kind of plays out like this:

I am pleased that I am able to move about in the real world and experience real life events.

I'm displeased because they continually try to take away my freedom.

I'm trying to get disability pay, as I have no way of supporting myself, but I am repeatedly getting denied.

Other health matters go unresolved, but insurance won't cover things and/or the doctors are incompetent and unwilling to help me.

From time to time, it gets really really warm in my room and I suffer accordingly.

It's also noisy in here, people yelling and screaming as though they were being murdered … and I suffer accordingly.

Sometimes staff members really like me. A lot. And it makes me feel good inside. Admittedly, I like the attention. And I enjoy the occasional adoration. But so does everybody else in real life, so what's the point in even mentioning it?

I post pictures of things. Everybody has phones these days and can take pictures of things. What's the big deal?

I over explain things. Medical things. That includes the SMA syndrome that I'm fairly certain I have and that nobody believes, despite mounting evidence supporting this.

Every now and again I am in pain. Sometimes lots of pain. Everybody suffers. My pain is no more important than anybody else's. Everybody hurts. And most people deal with it on their own, silently. With dignity. Or something.

I get stuck with unfortunate roommates. However, they also get stuck with me. I go on explaining how I am such a wonderful roommate almost always, and while that might be true, I'm sure there's something I'm doing that irritates the hell out of those who live with me (despite my being quiet as a mouse).

People give me things. I'm sure people give you things, too. It's not a big deal. I'm a nice human being, so people offer me stuff. Does that really matter? Is it necessary for me to indicate that I am liked or loved based upon the gifts I've received? No, it probably isn't.

The person who should be reading my offerings is an editor, some person in the industry, the kind of person that might one day help me put out a book detailing life in a nursing home from the perspective of an alert nursing home resident who sees just about everything.

Otherwise, I'm not offering much here beyond and besides detailing my everyday adventures. Of course, to me everything that is happening fascinates me. Or, I find the mundane intriguing. But why would anyone else?

Maybe those of you who are stuck, marooned, unable to get out and about tend to enjoy my meanderings. Then again, those of you who are unable to get out of bed, or move about, are also quite likely low on energy, low enough that they can't even read my words in the first place, without exhausting themselves.

Beyond possibly offering a momentary diversion, I'm not really helping anybody. And while it works for me to continually write about my experiences, just because I'm writing about them, doesn't mean anybody else wants to read about them.

So yeah, I am stuck in a nursing home. Everybody gets that. And really I should just be plain grateful that I have a roof over my head. The State of Arizona generously takes care of me. And my insurance provided a power wheelchair for me so that I can get around and experience life (to some extent, depending upon the rules on any given day).

Right now I'm grounded. They are doing their best, trying to find legitimate and illegitimate reasons to keep me stuck in my room.

I was supposed to visit my mother this weekend. She is suffering. Scammers have taken over $200 from her in the past week and I need to confiscate her checkbook. But because germs exist out there, the administrators here won't let me go out there. They say I'm going to bring germs back into the building if I go out there. However, we have a parade of visitors coming in every day (in here). Day in and day out, visitors are visiting.

I've already had RSV, the flu thing that's going around, and covid-19, all within the past 6 weeks. Yes, I've had every f****** possible illness out there, with the exception being monkeypox. And diphtheria. Haven't had polio either.

But really, based upon this logic, I should never be let out of my room ever again. Additionally, no one should ever be allowed in my room again unless they're wearing a space suit. Oxygen mask. Whatever. You know what I mean.

So they canceled all of my outdoor requests, and they've also told me I cannot exit out of either or any doorways. And the list of limitations goes on and on. However, I CAN have visitors. I can have as many visitors as I want. But I cannot go outside and sit atop the pedestrian overpass 50 yards away (by myself) so that I may perform my morning meditation.

My doctor and my doctor's office all think this is utterly ridiculous. We currently have zero cases of covid-19 in our unit. And I've been told we do not have any other illnesses either. So my doctor keeps sending notes, giving me permission to leave. And then of course, that permission gets revoked.

But here's part of the threat. Here's the thing they use against me. Last week when I went outside they listed me as having gone A.M.A. They marked me down as leaving against medical advice. I went AWOL. Apparently. Despite notifying staff members that I was going to ride around the block in my wheelchair.

So what happens next, is that they report this to the insurance. That's what they told me. That's what the nurses told me, that they had to report me to my insurance company. And from there, my insurance determines whether or not I would be kicked out of the nursing home. Why?

Well, here's the thinking. If I'm well enough to ride around the property in my wheelchair, I'm well enough to live on my own.

In any event, I am making plans to be homeless. Because, I'm just NOT doing this. I'm not. I can't go backwards. I can't have my freedom taken away. There's no flippin' way. I spent nearly seven years in bed, exclusively. In one room. A bedroom. Unable to go outside besides visiting the emergency room. So I would rather die alone in the desert, then be stuck in my room for the next decade or three.

Anyway, that's what I'm up against. And then of course, all the usual things. A staff member seemingly has a crush on me. My neighbor screams loudly throughout the night. I have unresolved medical issues. I finally received a shower after 19 days without (an illegal shower, against the rules, but whatever).

I mean sure, things are happening here and in my life, but does it really matter? Am I presenting these things in a creative fashion, in a way that would pull readers in. Entertain? Do I emotionally drain or emotionally sustain?

There's this quote from Anais Nin, "The role of a writer is not to say what we all can say, but what we are unable to say."

That's one of my guiding writing principles. And really, I'm not sure I'm doing that. I've tried over the years to get paid for my writing, but that's never come to fruition. That to me, means I am not good enough. My writing doesn't pass the test. So again, why am I doing this to you?

I know why it is that I'm writing for myself, it helps me. It's therapeutic. I think. But I shouldn't be dragging others into my everyday life. Through the muck. Everybody has their own muck.

And see, that's well over a thousand words right there. And that's a thousand life moments you'll never experience again. So the question is, was it worth it? Please, ask yourself.

After having read things, items, articles, that's what I ask myself. Was it worth the time I invested in reading the darned article in the first place? More often than not, it wasn't. My time is better spent being mindful. I don't need more clutter in my mind, and most probably, neither do you.

Anyway, take care. I appreciate each and any of you who choose to follow along. And if I were you, probably the only reason I would be following along is if I were stuck in bed, wanting to experience someone else's life from a similarly disabled vantage point. Other than that, I'm not quite sure. Perhaps I'm underestimating my abilities. Or my execution.





It sounds like you're having a low self-esteem day. I have a lot of those lately on top of the ME issues. So many times, I'll type a response to a thread and then delay sending it or delete it altogether (usually) because I worry that what I typed sounds dumb.

Suffice it to say, at the very least, if you did not post we'd worry about you.

Also have you been able to contact one of those lawyers yet?!!!! o_O I really think you should try Jonathan Ginsburg even though he does not seem to specialize in ME...just at least for a consultation.

Also maybe you already found this:

Maybe they can help you with the doctors you're dealing with. ???

I'm sorry your visit to your Mom was cancelled. That's so discouraging. Did you say she is in assisted living? I wonder if you could live there? Some of those facilities have both assisted living and nursing home areas. Anyway, just a thought that probably does not apply.

Saying a prayer for you and your Mom.
You are living in a completely different situation than I am.
In a completely different part of the world.
And you are very good at both describing in words and taking photos of this world.
It’s never boring.
You make me leave my own life for a while, and I love that.
(I wouldn’t like to be in your shoes, or your lack of shoes,
but I love that you invite us in to this world of yours, of which I would never had any knowledge of otherwise)
@Hi old griper, you! Well, I'm not saying that I blame you, you're just ready to go bursting forth, but there are a few problems. Like how will you ever provide sustenance for that protrusion from your tummy area? It would be easier to grab a hamburger and fries than it would be something medicinal.

How about your sisters? Surely (oh, lie if you have to, but please say it can be done) one of them could visit your mother and lift the offending checkbook, couldn't she? Mission accomplished. If you must, tell her she doesn't even have to visit you, visit Mom though. Of course she'll figure out how to obtain another one....old people and their money! It may be easier to get an unlisted phone #, have you thought of that? Oh, is anything left that's easy today? Truly, the world won't be happy until anyone our age and older has died off, of that I'm convinced. But things will still change, so the laugh is on them.

I think you're having a lot of thoughts that are gathering into one huge not very attractive gel today. Judee's just can't worry about it all and why should you?

Maybe you should call the social worker and tell her that you're on the verge of losing it. No, don't....they may move you into a wing that you don't want to go to. But talk to her....or a volunteering minister, priest, rabbi, etc. But not the person who has a crush on you, although you may keep her name and phone no. handy if you discover that you don't like being homeless.

Why can't you move in with Mom. Let me guess: rules, right? It's a situation alright and I'll join Judee and others in doing what they can for you....praying, meditating, whatever you feel works best. This thinking just can't be good for you at all! Yours, Lenora
Please keep writing and expressing your unique views of life.

Its has made my life better. And who knows what that means, but still.

Can simply relate to alot of what you've said here.

I agree your writing should be a book, memoirs or other form of Cautionary Tale.

So yes, on wonder how to find an editor?

I think the mistake is thinking everybody else is as challenged as we are. They aren't.

People actually read books and magazines. Listen to long form conversations and recall what they were about. Gain knowledge through the experiences of others.

Perhaps the single MOST IMPORTANT reason you have found yourself in this unique situation is you are CAPABLE OF serving this up in a way an older person stuck in the rest home, likely is not.

If you could succeed in "getting the word out" think of how it might help others and even transform the Adult Care industry. A civic project!
I forgot about Ombudsman. Maybe you've already heard of them. They're supposed to be a nursing home patient advocate group and I think by law every home is required to have one. You could do a search online and see. Maybe they could intervene for you. ??

Anyway like I said maybe you've already tried that and it wasn't much help but l thought I'd mention it just in case.

Edit: I think this might be the correct link but I'm on my phone right now and print is tiny so???

Edit #2: Here's the link for AZ:
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Thank you for the support. :) I will respond to each comment in the near future.

I'm getting ready to roll over to the hospital so that I may have my disintegrating feeding tube replaced, and I'm going to take full advantage of this off-campus event.

After they've completed the procedure, I'm going to take the slow road home. Perhaps it'll take me 3 hours! LOL
Hi Howard.....Don't ever think I'm placing your concerns in 2nd or even 3rd place. I'm not....they're real and I'd be feeling the exact same things.

Besides, this is not the best time of year for you (3rd year in a row of isolation) or for so many of us. Germs everywhere you go, including your own home.

We're all rooting for you, I'm sure you know that and yes, you want to see your mother in addition to nabbing her checkbook (for good reasons), but maybe one of your sisters could tend to this one important thing.

Speaking of that, perhaps you could ask the Ombudsman about your mother's situation? Who knows? Very sweet of the many replies, and Judee's ever helpful responses.

@ Judee, I do hope you'll feel better and I know you miss your sweet mother. I have a crab or two going on here, but feel that everyone else is worse than I am. So please don't feel that it's party time at the's not.

Anyone else with this truly never-ending cold that's going around? I have it, Rod doesn't....and I never go anywhere. But at least Howard will take in the sights for me today. For all of us who can't go out. And yes, some Christmas music is depressing. Yours, Lenora
Hey there folks -

I wrote a bunch of words and direct responses to your individual comments, but those words don't sound quite right. Too revealing, perhaps. So instead of posting an unfair amount of mumbo jumbo, I will instead offer a brief summation of sorts.

Visit -

The nursing home people are (finally) allowing me to visit my mother… today. And I am shocked.

Arrangements -

In regards to living with my mother - I cannot. I have no income. And she lives in a tiny apartment.

Mental State -

I had been quite angry (day in and day out) for three consecutive weeks, but now I've settled into something else.

Attorney -

None have called me back as of yet. I'm guessing it'll take additional weeks and months.

Writing -

As long as there's at least one person out there who enjoys my writing, I should probably continue posting. :)

Mom Help -

One of my sisters actually helped out by scheduling nurse visits for my mother. More importantly, I convinced my mother that it was fully necessary for these visits to take place. I explained that it would benefit ME, more than anyone else.

Medicated -

There aren't any professional types to talk to here at the nursing home. If a person mentions that they need to speak with somebody, that person will always be the in-house psychiatrist. And that person's solution is always to prescribe drugs.

But who the hell needs paid therapy sessions when I have you guys prompting me?

Thank you for your kind, thoughtful, and encouraging responses. Now if I can get someone to turn the damn heat off, I'll be all set, and I can go back to sleep! :)

Merry Christmas… if you're into that sort of thing.


Yes, I am overly sensitive to warming temperatures, and I'm sure a lot of you would kill for this kind of warmth right about now!

Hi @Howard.....and Merry Christmas to you, also. At least have a happier day if you can. You're visiting your mother, so that's a gift of sorts.

I know what you mean though, some years it just isn't easy. So we do it for those we love (or in your case, even "like") around you. But if you're in a bad mood, that's OK too. Can't say that I blame you.

I'm glad your sisters helped out with Mom. It's a tough situation and there's no obvious answer, is there?

Still problems with the heat? I swear places like hospitals and nursing homes are either freezing or you're overheating. Placement of vents makes all the difference, too, May I suggest that you open the door and let the built-up heat out? It helps in our bedroom. Of course the light shining in is a problem.

I hope you'll get a stocking tonight.....grumps especially need them, don't we?
Don't get lost on your way to your mother's (or have a driver who gets lost). And put your feet in her lap when you arrive. We enjoy your news. Yours, L.
Hey @Howard

It's been a while since we last heard from you. At the risk of sounding like a stalker, would you please let us know if you are OK (or not OK) when you are able?


Hey there, sorry about that. :-(

I've been doing a lot better since last Friday. I had been angry to the extent that I could barely function, or process (that phase lasted nearly 30 days). But now, they are allowing me to go back outside a short ways away from the building, so I am somewhat content having regained some of my freedom.

My wanting to be a real person again is in direct opposition to living in a nursing home. Which of course, makes sense, right? So I am currently working towards resolving that matter. :)

Thank you for checking in. Or checking on me. I'm sorry if I worried anybody.

to the extent that I could barely function,
Your rumored hints of a predicament, lead me to considering The Prisoner of Zenda.

does the "nursing home" do movie night? Sounds like the film Prisoner of Zenda should be viewed.

Or an episode from that old TV show about Alaska that was so good, about dubbing the film Prisoner of Zenda, in Innuit. (correction- Tiklit)

I"ve never really seen the film myself, it just exists symbolically. If your going to be a prisoner, might as well be in Zenda.

Looking into it, I am afraid the film does not technically involve any Prisoners, unless its a Jungian reference.

I always wondered where is Zenda located? Its in the fictional Kingdom of Ruritania, I just read, remotely hidden somewhere between Germany and ...

Phoenix, Arizona.
I've been doing a lot better since last Friday. I had been angry to the extent that I could barely function, or process (that phase lasted nearly 30 days). But now, they are allowing me to go back outside a short ways away from the building, so I am somewhat content having regained some of my freedom.
Did you visit that site I posted? It isn't a counseling site. Let me copy it here:
I mean it may not be helpful at all but at least maybe talk to them just for some additional information maybe???

Here's what they say on that website:
"The Long-Term Care Ombudsman Program (LTCOP) grew out of efforts by both federal and state governments to respond to widely reported concerns that our most frail and vulnerable citizens (those living in long-term care facilities) were subject to abuse, neglect and substandard care. These residents also lacked the ability to exercise their rights or voice complaints about their circumstances. The primary purpose of the Long-Term Care Ombudsman Program is to identify, investigate and resolve complaints made by or on behalf of residents of nursing homes, assisted living facilities, and adult foster care homes.

The LTCOP will make every reasonable effort to assist, advocate, and intervene on behalf of the resident. When investigating complaints, the program will respect the resident, maintain their confidentiality, and will focus complaint resolution on the resident’s wishes.

In addition to identifying, investigating and resolving complaints, the LTCOP:

  • Educates residents, families, facility staff and the community about long term care issues and services
  • Promotes and advocates for residents’ rights
  • Assists residents in obtaining needed services
  • Works with and supports family and resident councils"
Long-Term Care Ombudsman
When I was originally placed in the nursing home, that was one of my first contacts. But they weren't able to do anything to help at that time.

As always, thank you for the suggestion. I think I've got a few things temporarily ironed out here. They let me go to the park yesterday, so I got to spend 4 hours there (with written permission from the doctor and the nurse and host of others! LOL)

I need to put up a new blog entry updating the fascinating things that have happened in the past two weeks. Okay, not quite fascinating. But you know what I mean. :)

does the "nursing home" do movie night?
Nope. Really old people go to bed about 7:00 at night. I suppose they could have a movie during the afternoon, but nobody wants to leave their rooms. Or it's too difficult to execute that sort of plan. I'm not really sure. 95% of everybody stays in the room all day watching tv.

Still problems with the heat?
The heat issues have been far less problematic in the past couple of weeks. I've only had three instances where I've been trying to flee overheated. And that's not bad, not bad at all! :)

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