February 24, 2022

In which I catch up on the bizarre meeting with his health care team… and while I say it below, I just want to add a bit about how the CEO thanked me for choosing Select. And I wanted to say… choosing? CHOOSING? You’re thanking me for eating high school cafeteria pizza on the day where only pizza is being served. I didn’t CHOOSE to go to Select. I didn’t look over a pile of brochures, and then say to myself, “this one!”. I was told we were going to Select, and we did. Believe me, after my first five minutes of being on the floor, I wanted to leave. I wanted to get him back to the ICU. Or anywhere else. Choose? Choose my ass.

We walked the narrow path
Beneath the smoking skies
Sometimes you can barely tell the difference
Between darkness and light
Do you have faith
In what we believe?
The truest test is when we cannot
When we cannot see

So much to catch up on!

The meeting yesterday was … OK. Tim was still having the afib issues when they were in, so alarms kept going off every few seconds which made it really hard to concentrate, but if we’d moved into the hall we would have been too many people for that part of the hall because the exercise stairs are right there and there was a therapy going on there while everyone was milling around our door. So, a little chaotic.

Basically I met the head of each department; Respiratory, PT/OT/Speech, Nursing, Wound Care, the case manager, and the CEO of that branch of Select (who thanked me for choosing Select and I really didn’t know what to say because it’s not like I wanted to, or even knew who they were two months ago). Each department head told me what their department was in charge of, what they could do for Tim, what did I want to see improvements in with regards to Tim and their department, how to contact them if I had any questions or concerns later.

Then the case manager stuck around for a little while and asked me other questions, like do we live in a one-story house, are there stairs, how often am I home, yadda yadda. She asked me what my plan was, and I was like…. uh, get Tim recovered? I said that what I was hoping for was a few weeks or a month here at Select, then moving to inpatient rehab at UF Health Rehab for as long as that took (that I had originally been told 4-6 weeks but I understood it might be longer now, with losing so much muscle mass while bedridden), and then home where he can live a relatively normal life and go back to work, etc. She asked me what my backup plan was, and I was like…. uh ??? She said that she would start looking into nursing homes for me so I could start thinking about that as an option in case Tim never gets any better than he is now, as a nursing home might be better for me than having him home in this condition. So. Ouch. I mean, I get the whole “hope for the best, prepare for the worst” but dang, lady! “What if he doesn’t ever get any better than this” has been on my mind, sure, but I don’t want to VOICE it!!! I’d rather squash that down and not have to think about it, please and thank you! I’ll touch more on this later.

I said that my current, most immediate focus, was to get him back walking again (he hadn’t been able to walk since early February, becasue of the FMS), and to get him swallowing and off the tube feeds. Those were my two immediate, short-term goals.

Side note, I asked Tim if he did want to get better, and he squeezed the hell outta my hand.

I hear pounding feet in the
In the streets below, and the
And the women crying, and the
And the children know that there
There’s something wrong, and
It’s hard to belive that love will prevail

Oh, it won’t rain all the time
The sky won’t fall forever
And though the night seems long
Your tears won’t fall forever

Then about 8 PM last night, Select called me at home; everything is fine, they just moved him to another room that is closer to the nurse’s station and available for easier observation — they told me as I was leaving yesterday that they were going to, as he was still having some afib problems that weren’t resolving with push meds or an iv. They thought they were going to have to shock him out of it (they’ve had to do that over on 77 a couple of times so that doesn’t sound as drastic to me as you might think) but they tried a different medication, and that worked and got him back into regular rhythm. However, he was coughing a lot, and coughing a lot up, so the doctor made the call to put him back on the vent and give his lungs a rest, because he was really fighting for breath. They just wanted me to know so that I wasn’t surprised when I come in, in the morning, and find him on the vent again. They said that he is chilling out, watching TV, and is awake but not nearly as restless as he had been most of the day today (he was pulling at things while I was there, kept trying to take all his clothes off, trying to pull IVs out, you know, the regular. Sigh. Tim!!! Pulling it out yourself doesn’t mean you don’t have to wear it any more!

Then this morning, the doctor saw me in the hallway as I was waiting to sign in and talked to me a little bit about Tim’s night – which I thought was great because I just met him yesterday and he already remembered me (that’s good, right? Not that I’m THAT PERSON that people remember and are afraid of???).

He reiterated what the nurse had told me on the phone; the afib, not responding to medication, moving rooms, getting back on the vent through his trach, now on an IV drip of some meds that are helping to regulate his afib. The doctor also said they were going to delay the CT/Angio, because his kidney numbers are a little off and the contrast from the CT can cause kidney damage (this is why your One-Kidney Girl here can’t get high contrast CTs). He said that he’d like Tim to rest today, recover from yesterday, and not exert himself much.

Oh, when I’m lonely
I lie awake at night
And I wish you were here
I miss you
Can you tell me
Is there something more to belive in?
Or is this all there is?

In the pounding feet, in the
In the streets below, and the
And the window breaks, and
And a woman falls, there’s
There’s something wrong, it’s
It’s so hard to believe that love will prevail

Since I’ve been here at 10, they’ve had to clean him up twice; the second time was because they tried to get him in the chair, he started coughing, and when he starts coughing there’s no… how can I say this delicately? He’s still having GI issues and coughing kind of … clears everything out. So the nurses decided not to put him in the chair like PT wanted, which is fair – the doctor had already told me he wanted Tim on bed rest for as much as possible today. It’s just hard to see this as holding steady, and not a slide backwards.

One of my many disappointments with this place was that we were told he’d be getting three hours a day of therapies. But I think the most I’d seen him get since moving here was … twenty minutes? Now, part of that was his GI issues. But part of that was that they didn’t have the staff to take care of him at the level he needed. A sign that he never should have been moved here from ICU. Which I discussed with the doctor – I can’t remember if I started in that day, or the next, but I started asking if we could get him moved back since clearly Select didn’t have the staff to take care of him. Spoiler: I was pretty much ignored.

Which brings me back to what the new Case Worker said. What can I call her? Her name starts with a J and there’s not really anything I can think of other that JFC, haha. Anyway. Yes. What she said is … I don’t want to say “harsh” really, I mean, kind of? But also practical. And also not something I hadn’t already been thinking. I mean, let’s be honest here (and if you have Feelings, this might be a good place to bow out of reading for the rest of the day). Fear of Tim dying, fear of Tim being paralyzed and helpless, fear of Tim having the energy and liveliness of a potato has been fluttering around in my soul since Day One of this. I just try not to talk about it, and I even try not to think about it. You know that one Wanted Poster in the Harry Potter movie, of Sirius Black? The one where he’s holding his prison number and looking around screaming? There’s no sound on the poster, but he’s clearly screaming his lungs out? That’s what it’s like inside my head most of the time.

I talked it over with a few friends last night, because they are friends I’ve talked to already about my fears – what if I have to sell the property? What happens to my cats? Who can I give my pet tortoises to? What will happen to the gopher tortoises, to the deer, to the turkeys? Where do I live? How can I afford to live? What if I have to keep Tim in a nursing home for the rest of his life? What happens to HaldeCraft? How can I possibly get a Real Job? How can I take care of him? How do I take care of myself? How do I take care of both of us? At what point do I choose one cat, my beat-up paperback copy of Watership Down, my favorite Princess Leia shirt, and run away to Mexico?

One of the reasons I’m reposting everything here is to tell you, as I’m going over each day, when I was thinking about that. When I was worried. Which I was a lot, but at the time I didn’t want to worry people with. Now I have the bandwidth to tell more of the story, and also, I want anyone who finds this and is going through something similar that … hey, if you’re having the same worries? The same fears about money and working and moving and pets and everything….? That’s perfectly normal. You’re a normal reasonable human being in an abnormal unreasonable situation. It would be weird if you WEREN’T worried.

It won’t rain all the time
The sky won’t fall forever
And though the night seems long
Your tears won’t fall
Your tears won’t fall
Your tears won’t fall forever

Last night I had a dream
You came into my room
You took me into your arms
Whispering and kissing me
And telling me to still believe
But then the emptiness of a burning sea
Against which we see our darkest of sadness
Until I felt safe and warm
I fell asleep in your arms
When I awoke I cried again
For you were gone
Oh, can you hear me?

Please don’t tell me not to feel those things. I’m going to feel those things anyway, because that’s how anxiety works. What this new Case Worker said to me yesterday at first, paralyzed me, because she was putting a voice to fears that I’ve been keeping at bay, pushing down to a whisper. But last night, one of my friends said (and I hope they don’t mind me quoting them) “You’ve already had it in your head. This way – you have a health professional who is telling you that what you’ve been thinking is appropriate and important. It hurts like a son of a gun but it is a legitimate issue and isn’t something you should be thinking about alone.” and I cried and cried because she’s right — what I’ve been feeling, that I’ve been afraid to face, is appropriate. Anyone would be feeling these fears. It is important. It’s important to have plans and backup plans. It’s important to be willing to see all potential sides and outcomes. It’s important to hold space for feelings and say that it’s natural to have them. Yes, it is deeply sorrowful to think of organ donation and natural burials at Prairie Creek Conservatory. Yes, it turns my heart into petrified wood to think that I might have to sell my property and move if I need to find a job that will give me the health insurance and paycheck to keep Tim in a nursing home if it comes to that.

But I don’t have to face any of that alone. I have a village. And nobody throws a plan together, fixes shit, and gets shit done, like my village.

xoxo

PS. I did do valet parking today, but I’m too tired to talk about it. More on that tomorrow!

Whew. Do I even have to tell you how tired I was by the end of the day? Looking back, sometimes, I don’t know how I even drove myself home. Automatic pilot?

It won’t rain all the time
The sky won’t fall forever
And though the night seems long
Your tears won’t fall forever
It won’t rain all the time
The sky won’t fall forever
And though the night seems long
Your tears won’t fall
Your tears won’t fall
Your tears won’t fall forever

Lyrics by Siberry/Revell
It Can’t Rain all the Time