February 5, 2022

Here’s what I wrote that day; the first three paragraphs were what I sent to family, and then I copied that and added on the rest for Caring Bridge. Including what I did the day before when I found that damn ticket on my car! Which inspired me to write this note, and yes, I did keep it on my dashboard for the next… when did we move? About two weeks later? Yeah. Jeez. What a headache. Oof, and I’m not looking forward to writing about that move over to Select. Those douchenozzles.

I’m harboring a fugitive, a defector of a kind
And she lives in my soul and drinks of my wine
And I’d give my last breath to keep us alive
Are they coming for us with cameras or guns?
We don’t know which but we gotta run
And you say, “This is not what I bargained for”

Minor excitement before I got here this morning (everything is fine) — today was really the first day that Tim’s been aware of what’s happening when he gets this particular breathing treatment (all the other times, he’s been sedated). The bed can do this almost “magic fingers” type thing, where it shakes and shakes, kind of beating/massaging your back, to loosen up the gunk in your lungs. Today, it activated his motion sickness, and he threw up so hard that he threw up his feeding tube (never halfway, our Tim). Because of the inflated trach balloon, he did not aspirate, so there’s no worries there.

Right now he’s back on an NG tube, keeping his stomach … I forget if she said “deflated” or “constrained”, but basically, they’re trying to keep it empty in order to not let him throw anything else up. Later on today they’re going to put the feeding tube back in, but for now, he’s on anti-nausea meds and is sleeping.

They went ahead and canceled the test time off the vent to let him rest, and they might not get him up into the chair today, at least until they swap out the NG tube, because that tube is shorter than a lot of the others and there’s no real way to get him out of the bed with it. They’ll at least do some arm and leg stretches, even if they can’t get him into the chair. Poor Tim. Even in his sleep right now, he looks pretty pissed off about this whole day already.

So hide yourself
For me
All for me

We swore to ourselves we’d go to the end of the world
But I got caught up in the whirl and the twirl of it all
A day in the sun dancing alone
Baby, I’m so sorry
Now it’s coming to you the lessons I’ve learned
Won’t do you any good you’ve got to get burned
Well the curse and the blessing they’re one and the same
Baby, it’s all such a treacherous gain

Oh! I meant, yesterday, to explain about the sling. Here are a couple of photos. There’s this machine across the ceiling; it goes back and forth, left and right, so it can move you from wherever, to wherever. When they’re ready to put you in it, they put this sling underneath you. It looks like a regular comfort-glide thing, but with straps. They attach the straps to the handle of the machine on the ceiling, and then they can raise you, lower you, move you to the side, move you forward or backwards… and all the time, you’re sitting in it like a kid in a swing. It’s so cool!!!! Of course, Tim probably thinks it’s a lot less cool than I do… poor guy.

This photo has nothing to do with the sling, I posted that photo in the post about the 4th. Sigh. I’m really screwing myself with having posted photos not on the day I took them, aren’t I??? Sometimes when a nurse is helping a nurse, they have this conversation — “can you hand me a cap?” and the other one says “sure, do you want a hot dog or a hamburger?” The short wide ones are hamburgers, and the long thin ones are hot dogs.

And here’s something that’s definitely NOT cool… I got a parking warning! For parking! In the assigned parking garage for the tower I’m visiting! I KNOW.

Here’s what I get about that: it’s Gainesville. Parking in this town, if you’ve never been here, is (a) insane and (b) cutthroat. Almost every lot within a one mile radius of campus has large signs about how you’ll be towed if you’re not a customer of the establishment or a resident/employee of the apartment/business. So I get it. Parking here is free for visitors and patients, and I’m sure that some people try to take advantage of that by parking here to go to class, or the apartments across the street, or during football games, or whatever. So I get them trying to keep the free parking garage, free of riff-raff.

Hide yourself from me
I said hide yourself from me
All for me

I stood without clothes danced in the sand
I was aching with freedom kissing the damned
I said remember this as how it should be
Oh baby, I said it’s all in our hands
Got to learn to respect what we don’t understand
We are fortunate ones, fortunate ones, I swear

Here’s what I DON’T get: I am actually a visitor. I was warned that I couldn’t park here because it was for visitors and patients only, but I AM A VISITOR. It seems like not having a way to pre-enforce free parking, but by having a way to threaten and cause the visitor anxiety by actually following the rules, is kind of a … poor business model. Why not have a guard dude when you first come in? Why not have a kiosk with a tag you can put in your car saying what room you’re visiting? Why not have it validation-only parking? (I hear that across the street, in the care facility we might move too, visiting people on that floor is validation only parking. Why that floor and not the entire hospital?) Why not have some sort of computer system when you’re checking in that flags your car as ok to park? It just seems like there’s a half-dozen really simple solutions to keeping a handle on the free parking, without adding “make an already upset visitor even more anxious now when they come to visit their loved ones that also their car may be ticketed, booted, or towed” to the list of “fixes”.

When I took it off my car, I stomped back into the hospital, went to the information desk, and asked who I could talk to about not getting one of these [bullshit] warnings again. I explained to the information desk dude, with whom I’ve interacted a couple of times, that my husband’s name is this, and he’s in this room, he’s been here since December 24th, and I sure [as fucking shit] wish I didn’t have to park here every day but he’s here, so what are my options? No longer come to visit him? That’s not an option. Park somewhere else, where I’m definitely not allowed to? That’s not an option. It seems to me that the option in front of us is for me to talk to, let’s see, Officer Number T520, and explain to them that they’re warning me not to do the thing that I’m legally there to do so [what the actual fucking fuck] with all due respect [no fucking respect at all], let’s get this fixed.

Information Desk Dude said that they do have a computer system for listing license plates of people who park there regularly and he took my information and will make sure I get on that list. Meanwhile… blargh. A pox on all their houses.

In other news….? There is no other news. That’s pretty much it. Have a delicious snack and a cute cat who eats in a derpy way.

xoxo, y’all

I’ve said before, but so many things were on my mind. All of the time, and it was exhausting. And if you think I’m repeating myself now? You should have been in my head then. Even *I* was tired of myself! And yet. On my drive in, the thought in my head was always “how safe will it be for Tim to live out here if we have to make this drive for medical care a lot”. Then when I’d get to town, if I passed a house for sale, the thought was always “I wonder how much I could get if I sold our property and bought this place, if Tim needed closer medical care than we’d get living out there. Or if I had to live closer to where he was, if he was in a place.” Then throughout the day while sitting with him, wondering “how could I do this if I had to get a real job? How will I do it when I have to get a real job?” When I was driving home, my thoughts would be “what do I do if they call me today? What do I do if they call me with bad news? What do I do if they call me with the worst news?” And then when I was home, my thoughts would be about his things, all over the place; the clothes he never ever put in the dresser drawers even though he folded them, placed on top of the dresser. All the cooking stuff that he used for big meals that we did just a couple of times a year that were always in front of the things I needed all the time for every day cooking. The tools that he never put away after any of his projects. All of his stuff was out, and I was seeing it all the time, and … how did I feel about that? I always wished he’d put stuff away or not put stuff in my way, but what do I do now? Now’s my chance to put it all away, or put the stuff I use all the time in front. But will he be mad when he gets home? But what if he never gets home? If he does get home, how will our lives change? Will we have to change things in the house? What if he’s in a wheelchair, like my grandmother? We don’t have a ramp. None of our counters are wheelchair height. Some of these doors might need to be widened. It was as if my mind was walking down a hundred different roads a day, trying to see what was down the road so that I could prepare for it. For anything. It was exhausting.

Hide yourself for me
I will hide myself for you
All for you
All for you
I will hide myself for you
All for you

I stood without clothes I danced in the sand
I was aching with freedom kissing the damned
I said remember this as how it should be

Lyrics by Amy Ray
Fugitive