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Nursing Home Difficulties (Death, Dirty Howard, and Disestablishmentarianism)

*This super extensive never ending blog entry involves everyday struggles and a fair amount of negativity (and lots of frustration) with occasional joyous appeasement. Felonious easement? Well, something like that.

Please know that normal people would likely be better able to navigate these types of everyday obstacles with deft ease. The thing is, I do not process in a normal way. Which, most of you already know. Which is neither here nor there. Well, it is here. Literally. And actually.

Also, I do not require any assistance or help with anything. I'm just trying to explain things - detail the goings on.

And lastly, I'm apologizing in advance for all these words upon words. Normally I would spend time editing, editing down my blog entry to make it a more manageable read. But that's one of the reasons I have not been posting of late… I do not much feel like editing my own crap! LOL




In theory I exist, but in reality I actually do not. And I'm assuming it's because I live in a nursing home full time. Real people get real responses in real time. At least, that's what I used to experience in real life. Now, I don't even get the joy of experiencing red tape. Or getting caught up in red tape. Or heck, receiving supplies, including red tape, or any other color tape for that matter.

These days, I must beg, borrow, and steal medical supplies. Okay, mostly it's begging. People online send me medical tape (no, not the red kind!), cotton swabs, 4x4 non-woven bandages, etcetera and so on.

Oh, and since my dedicated CNA (Betsy) disappeared with Covid-19, I've also had to negotiate with the registry CNAs. Basically, the temporary CNAs who take care of me in her absence. Nobody wants to give me a shower. It's difficult. Or confusing. Or maybe there is some form of indescribable repulsivity emanating from my naked form, which is negatively impacting their psyches. Hell, I don't know what the problem is. In many instances I do not know what the problem is. But in reality, I haven't showered since last week. But that's not so bad. Other things are actually bad.

I've been trying to see a dentist. Any dentist. Anywhere. A dentist who will accept my insurance. Or accept me as a person. A nursing home person who needs stretcher transport. But really, I could use wheelchair transport, except that I cannot be in a wheelchair at a 90° angle, totally upright. I must be partially reclined. Because of this, the transportation authorities won't transport me. Anyway that's a whole different issue. Entirely. No one has an answer for that one either.

But, I've also needed to see an oral surgeon. I won't go into detail. But I've had mouth, bone, sinus pain for the past 12 years. Just beneath my nose and to the left. It hurts when I smile. Luckily, here, in the nursing home, I have not been smiling much lately.

Anyway, nobody will accept stretcher transport who will also take my insurance. I called 24 different establishments the other day, and I wore myself out. And I made myself angry. And I broke things. And I threw things.

Well, I threw things in my imagination. I really don't have anything I can afford to throw and/or break. But I'm doing my best to sound like a tough guy. Someone who takes out his vengeance on inanimate objects.

So Nurse Raleigh let Social Services know that I needed assistance... two weeks ago. And that I needed to see a dentist, on site. I needed someone to pull a tooth that hurts a lot. But thus far, no response from Social Services. So I left a message for them. I left a message with them. I left a message on their extension. Yet no one returns my call from the Social Services outfit. Ever. Indeed, I'm waiting for the first time ever that someone from Social Services responds to my beckon call. Beckoned call? Backend call? Blackened Calm. Yeahhhh. That's it!

In a nursing home, you don't return the calls to the residents. You ignore them until they f****** die. And lately, my people have been dying. Shaniqua just died 3 days ago. 32 years old. I won't get into it, or why it may have happened. She just donated stoma cleaning cotton balls to my cause no more than 10 days ago.

And my friend Diane died 3 weeks ago. I wrote an obituary (never posted) in the midst of being out of sorts over that. Heck, I'm still upset about that. Anyway, she's the one who used to joyously meet and greet me several times a day out in the courtyard. Otherwise, she was a very difficult human, at times. And I was her only (on the premises, or anywhere else) friend. In any case, she was a heavyweight fighter who lost the fight in round number 15.

Because I've used aliases for these people, you may not know exactly who I'm talking about. But still, they're dead now. No matter what name I used. Anyway I didn't feel like writing about that on the blog. People always die. That's what humans do. And just because I'm upset about it, makes no matter.

In the meantime, I've left a couple of messages for my case manager. Yes, my case manager for Mercy Care.

Mercy Care manages my health. Or, they manage my slow road into oblivion.

I'm not sure how these case managers fit into the whole equation. Why? Because they never seem to do a f***** thing! I've been asking for assistance to get dentures.

Among other things, I'd like to chew, once again. It's not that I eat much. And really, I could get by without chewing, but it's difficult to speak when teeth are falling out of your head. Or falling out of MY head. Either way, teeth are falling out, piece by piece. Or I wish they were. It would be less painful overall. Really, how do I extract my own teeth?

Well, Betsy volunteered to help, but that's about the only hope I have on that front.

Anyway, I've never once received a response from my case manager. Never ever ever. This person may not even exist. At one point, I did have a video call with her during the midst of the Covid-19 crisis. And she apologized. Repeatedly. Over and over. And she didn't know why she never ever called me back. She theorized that she may have thought I was somebody's grandson or something. Nope. She didn't realize I was an old person in a nursing home. I guess I wasn't clear enough.

"My name is Howard. I live in a f***** nursing home. Please f****** help me!"

So I guess that's on me.

But you sound so young… and you look so healthy… they say -

If only it were that simple. That easy. Or even halfway true.

Wait a second, what the hell is the point of this? Oh yeah, I got left outside for an hour and a half earlier in the week. My brain got baked. I started feeling physically ill after a while. It was hot. And it was humid. Monsoon season. You know how that works, right? The seasonal wind shift. The wind shift that ushers in humidity from distant places… primarily the Gulf of California, the Gulf of Mexico, and Mexico itself.

And then, once they did bring me inside they left me in the television room. For three hours. Directly beneath the alarm.

Yes, during a Covid-19 lockdown event, there's an alarm that goes off anytime someone exits the unit through the doorway to the outside world. It is super duper loud. The nurses hate it. They can't focus with the alarm going off all the time. And they have to stop whatever they're doing to manually shut the alarm off.

Anyway, I helped them destroy the alarm. Okay, not really destroy it, I simply helped them disable the alarm by suggesting they muffle it with a Tupperware container and some of my recently donated medical tape.

Unfortunately, that solution didn't last long. Today the maintenance crew reassembled the alarm, so it's back to its normal sounding off routine, just about every five minutes or so.

Oh, and if it's not obviously apparent, they are letting me go outside now. As long as I am masked up, and stay away from every single soul inside or out of the nursing home, that way, I can get into the Sun, and the sun can get into me, for a short period of time.

At least Angela hung out with me the other day (for about 45 minutes). I needed it. Perhaps she did too. She's rather young, and likely impervious to Covid-19. So she was willing to take the risk. Of course, I did have the window open. And she was wearing her n95 mask. And a face shield. And goggles. And I held my breath the whole time (in case anyone at the nursing home is reading this). I also had a bucket over my head. A dirty pail. It's stunk to high heaven. But as I've not had a shower of late …

So I did have some socialization.

And last night's CNA was personable. Lots of tattoos. Hair on her head. Old enough to know better. Young enough not to be jaded. I think her name was Vanessa. Or Marissa. Or Matilda. One of those old world names.

So she let me be funny and entertaining for a series of minutes. Consecutively. Allowing me to run through my atypical routine.

What happened was that she took my blood pressure and I was an astounding 186/56. Which really, is impossible. And I told her as much. That's not my regular number. Nope.

Again, these are the blood pressure machines they purchased off Craigslist for $18 each. So the accuracy expectations are quite low. Even so I had her strap the cuff onto my left upper arm. And of course, I came out as being 80/46. That's not good either. A low number like that means I have serious problems.

To keep the amusement going, she strapped the cuff around my right leg. Specifically, around my calf. And that was better. That was 126/60. Next she tried wrapping around other appendages. My big toe, for instance. Well, that didn't work out so well. Then she wrapped the cuff around my neck as part of a photo op. Yes, she was giggling. Perhaps even laughing. But I wasn't giggling. The darn thing was really tight around my esophagus. My pharynx was strained. My vocal cords were constricted. My carotid artery was pushed to the limits as I began to black out!

Note: she didn't really wrap the inflatable cuff around by neck

A few days earlier I had a CNA named Betsy II. She's a black woman. And I had her two nights in a row. And she almost gave me a shower each time, but it was always too late. It was too late by the time she completed her things. But at least she made the effort. On the second night we talked about the shower for nearly 20 minutes. Of course, in those 20 minutes I probably could have been showered. But I'm not trying to be critical here.

She was a joy to experience. A dynamic human. Someone attending nursing school. Someone who wants and needs to be a nurse. And more importantly, she said things that were both clever and funny, so I laughed. It's nice when those kinds of things happen - lively conversation going back and forth. It's not a usual occurrence. It doesn't seem most humans can hold a decent conversation these days. A lost art. A lack of interest. Me being a snob of some kind.

So by all means, text me instead. Instagram me. Facebook me. Twitter me. Emoji me. Shoot me a gang sign. Who needs conversation?

Anyway, I had some kind of illness. My stomach shut down for the 72 hours. Body aches, burning muscles head to toe. Profuse sweating. Confusion. Disorientation. Scratchy throat. But wouldn't you know, I keep testing negative for Covid-19.

Somehow, last night (Friday night), after they turned the air conditioning on, I started feeling better. Probably a coincidence. But for some reason, the air conditioning relieved my sweating component.

Oh, and when I've not been under the weather, I've been making music. Slowly but surely. Putting together compositions. Perhaps something you may like. But probably not. You remember, don't you? I make weird music. Or something. I compose unintelligible uninteresting unencumbered….

Eh, sometimes my stuff strikes the right chord. The right chord progression. The right chord regression, discretion, under a different impression.

But really, I've been having a lot of fun with the music, making and creating things now and again.

Speaking of music, one of the CNAs offered to buy me cookies in exchange for guitar lessons. I'm not sure I will take her up on this. It could be too exhausting. But I appreciate the offer. I'll have to think about it though.

And gosh, I hope Betsy's okay. I hope she's not suffering too much from Covid-19. She's a regular angel. And in my book, regular angels (hell, the entire variety of angels) shouldn't have to suffer. And you would think her best friend Blanche would let me know if anything were awry. But Blanche has yet to stop by to offer any updates. And I'm not sure what that means. Why wouldn't she stop by?

So yes, with my main cog not here the cogwheel is now broken.

In Conclusion

Okay then, I should probably wrap this up. This was all off the top of my head, so I don't know if this makes sense. Just me rambling on and on about this and that. And really, I should just write the damn book everybody says I should write. Right? I'm sure somebody out there wants to know about the inner workings of a nursing home from the perspective of an actual resident. And please keep in mind, much and most of the things that happen here I cannot or haven't put in a blog. So, you guys get the squeaky clean version of everything. Not that it really matters. It's not necessary to get down and dirty here. You've got plenty of that going on outside there, in the real world.

Anyway, If someone knows a publisher, or some type of editor, someone who wants to put out a book about nursing home experiences involving Howard, please let me know. Really, I need the income. My cookie habit exceeds my means to support it.

Speaking of that, I may or may not get the motorized wheelchair, because I do not receive disability, and I have no diagnosis. Yet. So I may need to find further ways to disable myself, to make it obvious that I actually do need a motorized wheelchair, and that I actually do require disability pay.

Seriously, $119 a month would be glorious. That would cover my probiotics, the stupid ingredient cookies I eat, and probably blueberries. Yes, I need to ramp up the blueberry thing, once my stomach starts working again. My objective is to overdose on antioxidants… and to paint my insides purple with delightful blueberry juices.

Oh crap, I hear the leaf blowers coming. I've got to close my window.

All right then, that didn't work out so well. The window is still open and I am going to get dusted into oblivion. I will push my button and see if anyone responds. Somehow, the window is jammed. Open. Or perhaps I'm just too weak and stupid. Probably a little of both. Goodbye for now.

17 Minutes Later

In case anyone is wondering, the door alarm has been blaring for the past 20 minutes. Apparently, no one is available to shut it off. Probably because they're too busy. Or the damn thing is broken.

One of the activities people came in here just now and said that I smell really bad, and said that everybody is complaining about it. Everybody? Well, I guess that means I must really smell bad, right?

Yes, I have body odor because I can't get a f****** shower! My sheets are dirty. My blanket is dirty. My pillows are dirty. And that's what happens when you don't shower in the summertime during monsoon season in the desert southwest -

And why exactly don't I shower? … because A: we're in quarantine! …and because B: my CNA is out with Covid-19!

It's quite difficult to get anybody else to take action regarding showering. Plus, I've got to be innovative. Last time (under quarantine) I didn't shower for two months! Of course, back before this, when I used to live in a residential residence, I didn't shower for six years. So for me, this is nothing. But apparently, for everybody else, I am creating problems. I am making people uncomfortable. Well then, wash me already! It's not like I'm refusing to get showered!

Hmmm… probably being sick for a couple of days, sweating profusely, hasn't helped either.

Lately

It seems I'm having fewer moments of joy of late. The last few months. Probably I'm burnt out on this lifestyle. The living situation. And the circumstances. Of course, joy and positivity are all something I can promote from within. It's something I can self generate. But being defeated at every turn is sometimes exhausting.

Of course, that's an exaggeration. I do have small victories now and again. I still have a room to myself. Can you believe it? They must really be trying to do me a solid. It's been 7 weeks since the television has been turned on!

It took me eight days of glorious phone labor (actually, it only took me eight hours of constant calling during one particularly trying day, but having been flustered, I paused for seven days before trying again…), but I finally found the dentist operation who takes care of the residents who live in this nursing home of mine.

And really, it was dumb luck. I was just looking for someone who took my insurance, and who could also pull a damn tooth within a reasonable time frame. But after having talked to these people, I'm going to have to wait at least five or six weeks before they can help.

*Sorry, I know I mentioned this before, but I'm having difficulty figure out what the hell I wrote and what the hell I didn't write. My bad!

Meanwhile, I'm in the midst of hustling a shower. Forcing the issue.

Oh. Nurse Raleigh just came in and said I don't smell that bad. And I don't believe her.

Before I forget, the stoma stuff has been better than ever. Or at least, not at all burdensome. I was able to secure additional 4x4 bandages that should tide me over until my next delivery comes in. Proper bandages, including proper care materials, really help.

Oh, good news... I'm letting this particular CNA borrow my EBT card, in order to purchase my cookie goods at a store that actually supplies my cookie goods… so no cost to her! Blueberries, too!

She was just going to buy the darned cookies for me (on her own), but I told her not to. She's not rich. I don't think. But she's one of those people that keeps wanting to help me - and also, one of those people I kept holding off. Until now! Eventually, it seems, people wear me down. It takes a while though. Truly, it does.

She was also the first person (the first non-Betsy person) to give me a shower a couple of months ago. She would have showered me today, as well, but she's not assigned to me. They have rules here. Some of which they follow, and some of which they do not.

Okay then, I guess we'll see what happens next. That's what life's all about. Living in the moment, waiting for the next thing to happen. So by all means, hang loose. Or hang ten, if you're into surfing. Or hangman, if you're into drawing limbless stick figures hanging from a gallows pole.


Take care,
Howard



P.S. I did receive a shower later in the evening. I clinbed into a reclining plastic shower chair with wheels. And despite being very uncomfortable, I did manage to get very clean. Allelujah!






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Comments

Online is real life to me, and most other bedridden folk.
I still cling to the distinction, in the vague hope that I'll be able to participate in RL sometime again.

But you're right.... my REAL real life is here on-line .... friends dont believe it, at least the ones that have hung in .... that the gregarious, outgoing dynamo is happy living in the nebulous cyber world. I say, try it before you dis it ...
 

I still cling to the distinction, in the vague hope that I'll be able to participate in RL sometime again.

But you're right.... my REAL real life is here on-line .... friends dont believe it, at least the ones that have hung in .... that the gregarious, outgoing dynamo is happy living in the nebulous cyberworld. I say, try it before you dis it ...

That is the right approach. “Like a grain of mustard seed.” Of course the nebulous cyber world suits me just fine, too!
 
Of course the nebulous cyber world suits me just fine, too!
Do you ever wonder how people with our debilities anaged to survive pre-internet? It just staggers me.


Maybe we wouldn't have had The Belle of Amherst if Dickinson had access to Amazon and topic surfing ... of course, they all had servants, at least if they were middle or upper class, who could do the same thing we do with online shopping..... hmmmm.... that still isnt as good as life in cyber .... so varied, so immediate, so rich in variety ....

And would the indomitable @Howard ever have developed his considerable writing and communication chops if not for this tedious little ass-wacker of an illness?

I've droned on before in other threads about the subtle gifts that come with the considerable handicaps of all this, and I really believe that....
 
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Do you ever wonder how people with our debilities anaged to survive pre-internet? It just staggers me.


Maybe we wouldn't have had The Belle of Amherst if Dickinson had access to Amazon and topic surfing ... of course, they all had servants, at least if they were middle or upper class, who could do the same thing we do with online shopping..... hmmmm.... that still isnt as good as life in cyber .... so varied, so immediate, so rich in variety ....

And would the indomitable @Howard ever have developed his considerable writing and communication chops if not for this tedious little ass-wacjer of an illness?

I've droned on before in other threads about the subtle gifts that come with the considerable handicaps of all this, and I really believe that....

I do wonder …

Perhaps if Ms. Dickinson had had access to Amazon and others, she might have penned the following, instead:

“There is Amazon Prime,
Ever so advantageous and fair,
And there are other subscription services,
Though they do not compare;
Never mind eBay or Walmart, Austin,
Never mind Netflix deals –”
 
This may be neither here nor there for anybody, but I need to put this out there in order to … clear the air? Or, something. It hurts me to see any of you upset, and/or upset with each other.

Following Cloudyskies lead…

Sunshine44 and I have been directly communicating since late 2018. More often than not, we've communicated on a daily basis, but if not that particular interval, it seems we've never gone more than a week without interacting - since late 2018.

I trust her intentions implicitly … with every ounce of trust I have - more so than any real people in my life.

She has no agenda. She only (selflessly) wants what's best for me. And that's something she's proven again and again over the years (I also hope each of you have this same type of support in real life :)).

As I mentioned in a previous comment, everybody goes about offering support differently, and rather importantly, in a variety of ways (which of course, I find particularly fascinating).

As an example, through Sunshine44, my emotional intelligence (my emotional IQ) continues to grow exponentially. I have a better sense for people these days, mostly including the people I associate with daily, here in this nursing home.

Among other selfless acts (far too many to mention), she also found my medical advocate for me (at a time when I desperately needed someone to help keep me out of the psych ward, and then also, this same person worked directly with the doctors and nursing staff when I was hospitalized with Covid-19 … not to mention hooking me up with a particularly prominent neuromuscular specialist at Mayo Clinic).

In conclusion, and to reiterate, there are an easy dozen of you here that I would personally vouch for – caring humans that I trust, and that I would blindly support without question (yes, the very same people who have ceaselessly supported me). I've learned how to be this way and trust myself through the people here, through my experiences with each of you on this website.

Be good, and please be good to each other :)
Howard
 
@Howard
I PM'd you about this, not wanting to create any more drama in your thread. To that end, I also wont be posting here any more ... as I said, not because I dont care, but because .... well, it's in the PM ....
 
Hey, @Howard,

You've been on my mind and your absence is worrisome to me.

I'm hoping you are "well enough" both in body and spirit.

No pressure, but if you are able to let us know, it would be good to hear from you, even if it's just a thumbs up or thumbs down emoji.

Best wishes,
Z
 
Hey, @Howard,

You've been on my mind and your absence is worrisome to me.

I'm hoping you are "well enough" both in body and spirit.

No pressure, but if you are able to let us know, it would be good to hear from you, even if it's just a thumbs up or thumbs down emoji.

Best wishes,
Z

Sorry about that, hadn't realized how much time had passed. I'm trying to figure things out right now. :)

I'm feeling okay.

Lockdown pic - ARGH ... Sorry 'bout that (also), VERY LARGE PICTURE!!!

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.I sent you several messages b

before...but erased them as I had nothing clever to say. So when in doubt...keep quiet Rufous.

I have a new neighbor across the hallway. I haven't; met him yet, maybe from New York, how exotic.

My husband met him a few days ago. I observed, as I heard voices outside.

And I've been waiting several days now, to be informed of this,. But no, its not worthy of a local news report.
 

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