February 20, 2022

A day where … nothing really happened, so I finished writing about what I was too tired to finish writing the day before. Then I was tired again. I was always tired. Not sleepy – tired. If I sat, I didn’t fall asleep, I just… stared. I’d come home, curl up in the green recliner next to the catio window, and let the cats sit on top of me while I stared off into the distance. Looking at it from the outside, that’s kind of sad. But it wasn’t at the time – it was how I’d shore myself up to get up the next day and do it all again.

I’ve made my mistakes it’s true
Maybe one and maybe two
Maybe more than quite a few
Need I even say?
I thought I could change someone
Light your way with what I’d done
Clear the clouds and shine some sun
Down on brighter days

That’s the way it coulda been
That’s the way it shoulda been
Don’t I wish it woulda been?
That wont make it so
I lie down with my regrets
Tryna sleep and can’t as yet
I guess I’m still that upset
Tryna let it go

Slow Sunday!

Tim’s asleep, he had a good night and slept well and I guess he enjoyed that so much he’s continuing it into the day, haha. Today is Rest Day; I don’t think there’s any PT/OT, they’re not feeding him today, to give him some bowel rest time (they really want to take out that FMS as soon as it’s not needed any more). Other than that, not much is going on. No rooms opened up at Select overnight, so we’re still in kind of a holding pattern. That’s about it!

Now, what didn’t I get to yesterday….?

So, here’s a funny story. OK, it’s not funny at all. Remember all that stress about paperwork to get Tim on Short Term Disability and I was worried that he’d lose his job if he just, like, didn’t show up or something, and how HR was really nice to me and promised to take care of everything, and I got POA so I could get into his bank account and get bills paid? Well. That was about … four and a half weeks ago… and …. the Engineering Company hasn’t come through with the Short Term Disability pay yet. But wait, there’s more! They also told me last week that becasue Tim is on Short Term Disability (which I just said, in case you’ve forgotten in three seconds, hasn’t been paying out), the Company is no longer deducting his Health Insurance Premiums from his (non-existent) paycheck. So I owe them $300 for January, I owed them $600 on February 1st (they told me this around the 15th or so), and I will owe them another $600 on March 1st. And the 1st of every month until he’s off Short Term Disability. Which they haven’t started paying us yet. If I don’t pay this, he might lose his health insurance, and wow would that ever be a shit-tastic time for that to happen! But it’s a little … harsh … that I owe them money I don’t feel like I can produce right now since they’re not… giving us any money. I mean… it does so happen that I can produce that money that they need for his health insurance. If I choose between that and one of his credit cards. But then, if they don’t start paying us his Short Term Disability, in about a month, it’s gonna be pretty fuckin rough. HR kind of left me hanging last week. Wednesday, I think, was the last day I heard from them, and they were going to look into why the Short Term Disability hasn’t started paying out yet. I guess I’ll email them first thing tomorrow morning and be like, hey, remember me…???? That will start my daily emails of “just checking in because I’d love to give you money, but I can’t give you money until you give me money!” until they start to give me money. Just call me Squeaky Wheel.

Lord. That Short Term Disability Stuff. When did I actually get a check from them….? I’m not sure exactly, I’d have to go back and look at my records, but I think it came in April or May. Tim died in March.

I love you and you love me
But not unconditionally
I can’t show you what I see
I’m not sure someone can
If I’s some reg’lar, laid back guy
Maybe we’d see eye to eye
I am who I am and I
Tried to be your man

That’s the way it coulda been
That’s the way it shoulda been
Don’t I wish it woulda been?
That wont make it so
I lie down with my regrets
Tryna sleep and can’t as yet
I guess I’m still that upset
Tryna let it go

Lastly… I thought I had the most functional conversation with Seagull Sarah, but now I’m starting to wonder. The other day when we had Super Competent Nurse Gwen, I asked her what exactly the deal was with Select vs. UF Health Rehab. That I’d been told the vent was the dividing line, then that the Dobhoff feeding tube was the dividing line, and just please for the love of fuck what is the fucking dividing line and can we cross it already for CRYING OUT LOUD. Well, she didn’t know, and she looked really sad that she was going to have to call the Case Manager because she’s the one who would know but Gwen and I had already discussed Seagull Sarah and Gwen knew how “happy” I was with her. But I said yeah, go ahead and call her, what’s the worst that could happen. Well….? It actually turned out to be at the moment what I thought was a really good conversation. She finally had a badge, with a nametag and a picture. She seemed to know what she was talking about, for once. She said, basically, that the one and only hurdle we’d have to cross was that if Tim has a Dobhoff feeding tube through his nose, UF Health Rehab can’t take him. He doesn’t have to be able to swallow, he can have what’s called a PEG Tube, which is a feeding tube that is surgically implanted and goes straight into the stomach through the abdominal wall. She said that UF Health Rehab also has requirements about the size of trachs, but he’s got the right size to be admitted there. So really it’s just the feeding tube. So I suggested that since we have some down-time, here, waiting on a room at Select in Gainesville, how about instead of just sitting and watching TV, we get Speech in here to start working with him on swallowing, or maybe talk to the doctor about a PEG tube, so that maybe when our permission to go to Select runs out on the 21st, next time we can ask for permission to go straight to UF Health Rehab instead. She loved that idea and will get right on it. This was… I don’t know. Thursday?

But then yesterday when I was chatting with OT and Nurse Britt as they were getting Tim ready to do some activities, they both said no, UF Health Rehab can’t take Tim with a PEG tube, either. That the requirement is that he be able to chew and swallow. So even if he had a PEG tube instead of a Dobhoff tube, he’d still have to be able to chew and swallow. And he still can’t swallow. And the better therapy for that comes from Select, instead of from here in Shands. By “better” I mean “more hours per day/more intense rehab” than here at Shands. Three hours a day instead of about 20 minutes. One hour for PT, one hour for OT (even though PT and OT tend to work pretty hand-in-hand), and one hour a day for Speech (which includes swallowing).

I have so much to say about this, now, in retrospect. First off, get your fucking stories together. Figure out what the hurdle is and don’t keep moving it, changing it, getting it wrong, whatever. JESUS. How hard is it to have fucking rules and standards, and go by them? Second, Select sucked a bag of dicks; even on his GOOD days (which, granted, he didn’t have many of by the time he got there) he didn’t get anywhere near three hours of of therapies a day. I vaguely understand why; he couldn’t move out of bed a lot, they were short staffed, he still had diarrhea and they (a) couldn’t move him back and forth a lot while he did and (b) didn’t even have the staff to keep him clean as much as he needed, let alone get PT/OT in there. I saw the respiratory therapist more than anyone else, I think. But. I’ll bitch about that more when we get there.

I feel bad and I feel blue
More than I’m accustomed to
I’ll move on and I’ll see you
When that moment comes
If I’d’ve played a card or two
Differently, well, maybe you
Would have been receptive to
Where I’m coming from

That’s the way it coulda been
That’s the way it shoulda been
Don’t I wish it woulda been?
That wont make it so
I lie down with my regrets
Tryna sleep and can’t as yet
I guess I’m still that upset
Tryna let it go

So I don’t fuckin’ know any more. Maybe he’ll go to Select. Maybe he’ll thrive and Select and not need to go to UF Health Rehab. Maybe he’ll do a couple of weeks at Select and then graduate to inpatient at UF Health Rehab and spend a couple of weeks there, and then come home to outpatient rehab. Or maybe we’ll just stay here at Shands for the rest of our lives, and I’ll sell the property and give away all my cats and just sleep here in Tim’s room at Shands and … I don’t know, I think there’s a gym around here, I could shower at occasionally. There’s free coffee across from the nurse’s station. I’ll figure it out.

Blargh.

Happy Sunday?

I think I want to go home early today and just …. eat boozy chocolate for the rest of the entire day.

It’s funny how, months later, I can feel just as tired about all of this, now, as I did then. But it’s OK, though – feeling it now is more like … saying goodbye to the feeling, not … reliving it. It’s just as real but it’s not as heavy. It’s good therapy. That’s a lot of why I’m writing all this out, and being more honest about how I felt at the time. It’s more like clearing everything out. Like when you unpack a box from a few moves ago that you never got around to unpacking – you take stuff out, you examine it, and if that stuff doesn’t serve you any more, you pass it on.

Got some land in Idaho
I may get there I don’t know
Waste some time and watch it snow
Down on ev’rything
You wont budge and so I’ll go
Even though I love you so
I’d’ve still tried harder though
What good would it bring?

That’s the way it coulda been
That’s the way it shoulda been
Don’t I wish it woulda been?
That wont make it so
I lie down with my regrets
Tryna sleep and can’t as yet
I guess I’m still that upset
Tryna let it go

Lyrics by Steve Forbert
Tryin’ to Let it Go