Questions Proposes, Questions Answered

A Grave New World (note: this particular subtitle has nothing to do with anything.. or does it?)

I figured at this point in the adventure everyone's up to snuff regarding my situational bliss. Well, much more bliss than I'd been used to in these recent years. Anyway, I'm joyously (for the most part) exploring this new life by way of (and through) my direct interactions with others. As you likely now know, I'd been particularly isolated these past six years .. that's besides occasional semi-regular interactions with my former wife, and more recently.. part-time caregivers.

Anyway, the "people" equation is what fascinates me most right now. But perhaps not to you. I recognize that several of you are mostly alone, so maybe this kind of human exploration/investigation helps somehow. From where I lay, it's difficult to know what's of interest, especially from my perspective, that of a person who is interested in most everything.

So let's see if answering pointed questions sharpens my resolve, shall we?

@christiankatz : Are the rooms carpeted?

No. It appears as though the floor is tiled, but the tiles resemble planks of wood off of a century's old pirate ship. So as one would expect, the acoustics are extremely acoustical here. Bounce, sound... bounce!

As an aside… My Medical Advocate now wants to ditch the medical angle (who wouldn't, by now?) in order to become my all-new Literary Agent!* Which unfortunately, does not bode well in regards to my recovering from this illness. So perhaps she's ready to jump ship!

M.E./C.F.S. is hard. Real hard.

*No. It's okay. She wears many hats. And I suspect a bandana, every now and again.


@sunshine44 : Why do they keep the rooms so hot?

It's probably best to determine who "they" are first. Right now it's 80° in my room. And that's warm. Last night at this exact same time (9:07pm) it was 63° in my room.

If we do the math, it means that the temperature averaged-out, comes to a near perfect 71.5° .. and who would dare complain about that?

Is there a dividing curtain?

Yes. We are very divided here. In most ways it seems. But he can see my toes and feet. I'm rather long, compared to most residents.

What is it like to experience air.. outside, after so many years with only inside air?

It is rather incredible that I am now regularly exposed to fresh air. And also, air filled with cigarette smoke (during the Smoker's Breaks). Good question though.

Intermittent food smells (emanating from the kitchen) offer a pleasant change of pace.

Airborne allergens? Yes, I seem to be occasionally allergic or irritated by something, depending on which way the wind blows on any given day.

Natural aromas are pleasing, too. Orange blossoms today. I think. And the tiny garden emits different earthy odors as well, immediately after having been watered.

But I think the best and most freeing thing has to do with the wind. Any breeze at all is refreshing and desirable. The unpredictability of the sensation is beyond pleasing, too. Sometimes I am startled by the wind's sudden intrusion, other times (and mostly), I feel as though I am being gently and lovingly caressed.

Another aside… Yes. Baby food. Great idea. But so far at least, tiny tiny bits of seaweed are being tolerated.


@lenora : How did Evelyn end up in a different facility than her husband?

It's a V.A. versus non-V.A. issue. Probably resolved within 60-days.

As far as your Ex… why do you care if she knows if you are on Netflix or who you are talking to on your phone?

I do not wish to be associated with her in any way. She no longer wanted me around, so in turn… I'm NOT going to be around. My efforts are now focused elsewhere and I am emotionally invested in other people (who are more apt to reciprocate).

But again, I'm not losing sleep over this. :)

Has your roommate spoken at all?

Rarely. He does sort of smile and nod his head, though.

So life is better or worse with the room move?

Better. Lots better.

I miss the occasional sports related interactions with Jeff, and helping him out with matters. But, it's far less intense here. And sometimes calming.

Thus far, I've been fairly ignored (up to a 90-minute wait for CNA's to respond to my call button), and my roommate does blast his TV volume each night, but that's only for three hours.

As an aside… Thank you for the gifts. I'll give a more thorough rundown with pics once I find a CNA who'll assist in my cataloguing. And that goes for each of you.

Made Up Question

What percentage of the residents are capable of engaging socially?

We have 28 rooms in our wing, with approximately 50 residents. Of those, five are capable and willing to talk out loud, using words. So that's 10% right there.

In the rehab wing, the numbers are higher.. probably 50% of the residents are willing/capable of holding a conversation.

< end >

If anybody else (or even the same people) have questions, feel free to inquire? No questions are too outlandish, although my responses very well may be.


The Tale of the Invisible CNA

I was extremely underwhelmed by the service here today. For instance, I've been trying to get my urinal emptied since 5 PM (it's 930 PM, and I gotta go!). I was also left outside in the cold darkness for 73-minutes, because… no one would come out to get me.

I think the earlier nurse was conspiring against me (she was documented as not having fed me, on three separate occasions). So I'm sure she's still pissed off at me. She ignores me, which is better than being confronted… I suppose.

It's 11:11 PM now and I wish I were sleeping. Yet, still I wait. For water. Or possibly a formula bag cleaning and a bandage change. Or really, any response whatsoever from the CNA.

We've been on the clock for 57 minutes now. And maybe that's the negative thing about being located at Facility's End. My room is located the furthest possible distance away from everything, including the nurses station (heck, the hallway outside of my room is used for storage). Quieter? Yes. Thankfully so. But service sucks out here on the fringes.

15 Minutes Later …

I'm beginning to think that nobody else is in the building. Although, I just saw a vehicle pull into the main entryway. Perhaps it's the overnight nurse or a random CNA dropping in. Apparently the one last night drove down from Sedona.. a rather long trek of nearly 2 hours.

Hmmm… since I don't have any water left, I may pour applesauce into my formula bag. Why not? I've got to do something. I'm assuming we are alone, needing to fend for ourselves tonight. Wish I had a harpoon. And chewing gum. And an easy means to make myself mobile.

Midnight Arrival, They Live!

Soooo… an Overnight Nurse walks into a room..., "It says here you need formula and shit?"

I explain about the formula and explain about the "and shit" and she seems to be rather standoffish but completes the required tasks as instructed. So there's that.

It seems the random registry nurses that cover the graveyard shifts are always put off by my simply existing. Maybe formula feeding tasks are far beneath them. I mean, they cannot truly dislike me when they've not even met me, can they?

Factions and Class Actions

There seems to be a more divided front, as it pertains to my mere presence and existing here at the facility. Yes. The numbers of those employed who seem aggravated upon seeing me is ever increasing. I'm half-assuming a story is being told, narrator unknown.

It could be me. I mean, perhaps my behavior and interactions with staff have gone above and beyond a previously established threshold. And I swear, I'm not trying to make these people dislike me. And I'm not difficult at all. I ask for very little, and I do so rather infrequently.

Next on the agenda… has my behavior changed? Look within, right?

And Lastly

I slept. Again. Six hours. In a row. Gosh darn, that's impressive! Thank you Brand New Roommate!


Take care,
Howard


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Comments

So your medical advocate isn't still trying to find another location for you?

Not clear about your status on the baby food. Are you still researching something you think might work as far as baby food goes...................or are you saying no to baby food for now? I've not known how much you could actually handle of oral food.

I would ask for an additional urinal to have on standby.

Sorry you were left out in the dark/cold. Good grief. That must have felt kind of weird. Now another thing to add to your list..... bring some extra cover when going outside to have on hand...............just in case.
 
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So your medical advocate isn't still trying to find another location for you? Are you still thinking about Flagstaff?

Not clear about your status on the baby food? Are you still researching something you think might work as far as baby food goes...................or are you saying no to baby food for now?
The search for a new locale continues. :) ... but it's no longer a desperate search, if only because I am now sleeping. Which seems to be helping me overall. Although it's too early to judge.

I am thinking that Flagstaff will be dependent upon how my initial appointment goes with the M.E. / c f s specialist in May.

With the baby food I need to figure out which specific kinds I shall be able to tolerate... if any. I require something that will excite my taste buds, and make me salivate, get the digestive process motivated, but also something that's not too harsh on the system. So it may take a while to narrow things down.

I'd actually prefer a dry snack, something I could bring outside with me or carry around with me that's not going to spoil after opening. Because really, I'm only good for one bite or two, so the rest of everything will have to be disposed of. Due to spoilage.

And then, having done so, I can likely order through Amazon as long as the products are EBT friendly.

Based upon my initial results, little bites here and there, I don't think I'll be able to really eat anything substantial. Mostly, I'm just looking for something that triggers, or helps trigger, the digestive process. What those magic ingredients are, I do not know. :)
 
Nurse walks into a room......"It says here......you need formula and shit"
That would have irritated/annoyed me from the get go.
So many good comebacks could have been derived from that statement.............but I know you have to try and remain on their good side.
 
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The salivation issue is a problem here too, so drinking nutritional drinks is the answer for me. But my guess is you can't really drink yet but maybe soon (hoping). Plus it's not easy to find something that's vegan and not filled with lots of scary ingredients. My drinks aren't vegan.

Yay, I'm happy you can tolerate eating a little seaweed!

P.S. I'm so happy you're moving on so well from the former person.

Yikes, there are not many people to talk to there (10%). It's great you have people outside to talk to and nurses and CNAs.
 
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Hi, @Howard

Have you ever trialed any prescription prokinetics n' shit?

I have tried several, if you are interested in discussing.

Meanwhile, I am delighted to hear that your room change seems (fingers crossed) to have enabled better sleep. I am distraught to hear that you have been left to languish without prompt attention to bodily functions such as tube formula, water, and urination. 🤬
 
That would have irritated/annoyed me from the get go. .............but I know you have to try and remain on their good side.
Right. I've already experienced blowback as a result of my whistle blowing. Is blowback the correct word?

But yes, I am vulnerable here in bed. And I need to depend upon people who don't necessarily care about me or my well being. Mostly, it's okay though.

Try something that tastes bitter.
Any recommendations from anybody? A seasoning maybe?


Yikes, there are not many people to talk to there (10%). It's great you have people outside to talk to and nurses and CNAs.
Yeah. I'd really like to facilitate the establishment of a social grouping, wherein conversational residents could be introduced to each other.

At some point, I will begin making recommendations, but I've got to be careful not to offend paid staff members. There's a subtle way to make suggestions. The problem being, I'm not all that subtle.

Have you ever trialed any prescription prokinetics n' shit?
Yes, I tried the one that crosses the blood-brain barrier (Reglan), and had a very bad reaction to it... disoriented and unable to speak. Things did move in my intestines, briefly. :)

And then I purchased some Domperidone from China, but it got lost somewhere in the condo. Misplaced. Thrown away. Not sure.

And I am allergic to erythromycin. :-(

I'm aiming to see a GI again, as soon as the neurology stuff concludes.
 
Hi @Howard.....well, as you've learned it really is worthwhile to try to stay on the good side of the staff. Some people are just difficult, no matter the circumstances.

Being at the end of the hallways definitely doesn't help....I've been there myself. That's why I thought the chocolates may help, but then I read where there are all sorts of problems with them.....sorry about that. Perhaps the newer ones will be better. I hope so. I was able to use some delivered cookies myself...and trust me, they were gobbled up in a hurry.

Insofar as clothing goes, since we are entering winter, why don't you have some of your summer things put underneath the medical equipment? Storage of sorts. Keep the warmer things on top, although I'm sure you'll still want some shorts and perhaps a tee-shirt. It's easy to dress for warmth but remember it may be quite chilly outside.

I think people are very interesting. Always have, but I'm from a huge family and recognized early on that all personality types just aren't the same at all. I'm not offended when someone is quiet....I think it's "just their way." Now a grumpy nurse is something else. Glad you like your roommate & the peace and quiet (well, for the most part).

Have you received a poster or two by now? Although it seems you don't have anyone to hang things. Where are those pleasant nurses, or your friend who represents you? She sounds like a very nice lady. Yours, Lenora.
 
Hi @Howard....I don't mean to hijack this thread, but can't write to you any other way.

Rufous has been ill and wanted me to let you know. She now has PEM and is spending a lot of time in bed and is still having mild nausea. Her daughter and granddaughter arrived and will be leaving to visit someone else for a few days on Wednesday.

I doubt that she's ready for your brand of music yet :) but if you want to try it, who am I to stop you. I hope my other message reached you....but if it didn't, now you know.
 
Any recommendations from anybody? A seasoning maybe?
Sorry, I don't know of any seasoning that has helped. Drinking a beer used to help, lol.

Sometimes viewing images of food online will potentially give me an appetite, but only for the particular food I'm looking at, which isn't readily available to me. It's usually fancy sandwiches like the one Adam Sandler made in the movie Spanglish that help. But I was never a sandwich person, so it doesn't make sense. I used to love pizza, but it does nothing for me now and same with about anything else food-wise.

I have more questions. Were you able to sneak out of your room without Jeff knowing you were leaving, and if not, did he know why you left?

Do you know why 90% of the residents in your wing quit talking? My guess is dementia, but perhaps I'm wrong.
 

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