February 17, 2022

Ohhhhhh, this was THIS day. This was a headache and a half. I am so, so glad I stood my ground on this. If they had actually moved us to …. well, let me let you read about the day, first, in case you missed it when I posted it on Caring Bridge in February.

When I find myself in times of trouble, Mother Mary comes to me
Speaking words of wisdom, let it be
And in my hour of darkness she is standing right in front of me
Speaking words of wisdom, let it be
Let it be, let it be, let it be, let it be
Whisper words of wisdom, let it be

Oh, no, wait, I’ll start first with what I wrote to family.

So, the only thing really going on today is the thing about Select. The nurse mentioned it right off, that there’s not a place in Gainesville, and I said that Seagull Sarah had called me yesterday to ask if Daytona was OK. The nurse asked where we were from, and I said “Gainesville” and she was like, “yeah, Daytona’s not going to work for you. You need to be where your people are.” I did explain to Tim what was going on, I’m not sure how much of it he really understood, though. The more awake he gets, the more confused about where he is and why he’s here. I told him to rest, think about it, and before I made a decision and called Sarah I’d wait for him to tell me Daytona or Gainesville.

I also just had a long conversation with the new nurse (Gwen, but not Night Nurse Gwen), about Seagull Sarah, and she says she’s going to speak with her (Gwen’s) manager about trying to get me a new case manager.

Which is hilarious, because a friend of a friend who’s some kind of high muckity-muck in HR here at Shands came to speak with me yesterday after hearing second-hand about my Seagull Sarah stories, and she was VERY interested in my feedback and is going to take it to Sarah’s boss’s boss. Not in a “fire this idiot” kind of way but in a “hey, boss’s boss, you happen to be new, and Sarah is new, so I was wondering if I could meet everyone is new, and by the way, here’s some feedback I have on your new employee, maybe this is something we can work on together” kind of way.

Right now, Tim is resting, waiting for PT/OT to come in, and that’s pretty much where we are today!

So. Yes. I’m so glad I stood my ground on this and didn’t let them move us to Daytona. If everything that happened after the move to Select, had happened in Daytona? And I hadn’t been able to be there? I would have LOST MY FUCKING SHIT. My already tenuous hold on reality would have snapped, and I genuinely don’t know what I would have done. Nothing good for Seagull Sarah, that’s for sure.

And when the broken hearted people living in the world agree
There will be an answer, let it be
For though they may be parted, there is still a chance that they will see
There will be an answer, let it be
Let it be, let it be, let it be, let it be
There will be an answer, let it be

And now here’s what I put on Caring Bridge.

So, really the only thing going on today is deciding if we want to move to Daytona Beach or not.

No, really.

Kind of.

In the latest episode of what I’m going to start calling Seagull Sarah Suggests (hey, old school Gainesville, would that be a great opening act for Naomi’s Hair, or what?!)… Seagull called me yesterday afternoon and wanted to let me know that Tim has been medically approved by Shands to move to Select, that our insurance company– I has OKayed the move and agreed to pay for whatever they pay for, but (you knew there had to be a “but”, right?) … Select in Gainesville doesn’t have any beds open. Our “permission” is good until the 21st of this month, so ideally a bed would open up at Select before then.

Or, Seagull says, she called around to find any other bed in Florida, and found one really close! It’s only in Daytona Beach! Everybody loves the beach, right? And she checked and Google Maps tells her that Daytona Beach is only one hour and 45 minutes away from Keystone Heights! Isn’t that awesome?!

Well, no, not really, but thank you.

One thing that bugged me FOR YEARS about Tim was his refusal to get an eye exam and new glasses. He went somewhere to get an eye exam and new glasses about the same time we started dating and he didn’t like that guy and because of that experience (although maybe he’d had others, before that, and just didn’t tell me) he didn’t like eye exams and he didn’t want to have to buy new glasses. So his glasses were in TERRIBLE shape. And watching him, or the nurses, try to put them on him and take them off, when neither temple tip had rubber on them any more, so they were sharp and pointed….? And one of the nose pads had fallen off so it was poking him in the side of the face? I couldn’t take it any more and I bought some stuff to try to fix them. It took more time to look for the stuff on Amazon than it did for me to fix the glasses and … I just wanted to… why, Tim? Why didn’t you ever do this for yourself? It took five minutes! Your glasses could have been so much more comfortable for so long, even if you couldn’t see out of them because the prescription was like twenty years old??? WHY????? There are things I will never understand about him. Sigh.

Here are my concerns, in no particular order —
I know nothing about the Daytona Select place other than what I was able to get from their website (looks small but clean and fine) and their Facebook page (which says that their Covid policy is No Visitors).
We don’t have a support network in Daytona Beach.
I could not get to Daytona Beach every day, seven days a week, and due to no support network there do not have anyone I could ask to go, say, every other day, while I went every other day. (Provided their Facebook page is wrong, and they do allow visitors after all.)
Ultimately, I have my heart set on getting him into UF Health Rehab. If he moves to Select in Daytona, how hard is it going to be to be able to get him back into a place in G’ville? Will it be one of those “well, now you’re in Daytona, so it’s just going to be more seamless to get him inpatient rehab in Daytona” kind of things? What if G’ville won’t take him because he’s in Daytona?
What am I supposed to do about visiting him, keeping his spirits up, and advocating for him if (a) they don’t allow visitors or (b) I can only get there once or twice a week? Yes, I can call his team and speak to them on the phone, but how phone-ready is Tim himself? If I can’t get to him in person, I’m going to want to be able to speak with him daily, to asses his tone and attitude.
Frankly, my gut just says “no”… even with how much I love the beach. I’d rather go there WITH Tim for a vacation rather than … whatever this is.

The world’s most boring elevator.

Your thoughts on this are welcome, but I’m not really asking for advice here — I have already called the Seagull this morning and told her thank you but we are not interested in Daytona, and will wait for something in Gainesville.

Let’s see… in other news? I dunno, really, in spite of telling the Seagull “thank you but no thank you” that’s really all I can think about this morning (look at me, second-guessing myself even though I’m CERTAIN I’ve made the right choice). Tim is resting up, he didn’t sleep very well last night and so I’m letting him nap before PT/OT get here in a little while (usually some time between 10 and 11). Plus I’m a little flustered today because I somehow forgot to bring my mouse AGAIN and having to use the trackpad on my laptop is messing with me (I have a tendency to hit it with my wrist as I’m typing and that will somehow select and delete entire paragraphs).

So, I dunno…. have some photos from yesterday.

This was also about the time that Shop Elf randomly messaged me about a piece of furniture it saw, and did I want it, and I said no, but you know what I WOULD like is some sort of bookcase or something, with removable shelves, that I could flip over, take the shelves out, and use as a home for the two small girl tortoises. Five minutes later it texted me a picture of this, and I was like, PERFECT. So Shop Elf brought it out and I got to work. It wasn’t all done in one day, but I’ll show it again when I finished it.

PS. I did tell Tim about this whole Daytona vs G’ville choice, and told him that his voice is absolutely valid in this, that if he wants to go and start more intense rehab right this minute, we can go to Daytona today. Or we can wait through the 21st and see if a bed opens up in Gainesville. And if a bed doesn’t open up before then, it just means that Seagull has more paperwork to do, not a thing that I feel terribly bad about.

And when the night is cloudy there is still a light that shines on me
Shinin’ until tomorrow, let it be
I wake up to the sound of music, Mother Mary comes to me
Speaking words of wisdom, let it be
And let it be, let it be, let it be, let it be
Whisper words of wisdom, let it be

Lyrics by Lennon/McCartney
Let it Be