Sometime in early March of 2020 I accepted what was happening. I say sometime because I honestly cant see that period of time clearly in my head at all. I know hospice came, and left on a Sunday.
That was the most surreal, out of my mind, crazy, what is going on experience of my life. The coordinator that came to the house was nice enough, I guess. Just your average middle aged Nurse type - wearing scrubs, and her hair pulled back. I would hate to have her job, actually hate it.
We all were sitting in the living room. Trey at the center of the front window, Brenda on his right, Tommy on an ottoman to her right, I was sitting in this same chair that I am now facing Trey, my mother & Benton were in front of the fireplace/hovering in the dining room. At this point I could not understand at all what was going on. This lady was talking about end of life stuff, to resuscitate - or not, no longer going to the Dr for anything. Basically it sounded like ‘sign here, and sign your life away’. It was honestly that blunt, and confusing. I could not get anything, at all to make any sense in my mind.
NOTHING made sense. From the very beginning of diagnoses Trey had really clicked with Dr. Orcutt, on everything. Anything Orcutt said - he listened too, absolutely everything. Even what type of lotion to use, and soap. He listened to everything…in detail. If Orcutt said it, or Liza(his assistant) it was set in stone. Always.
But, here we are in this awkwardly uncomfortable meeting with this lady from hospice, talking about things that I can not even comprehend … having this conversation with someone that CLEARLY is not in need of hospice care(for goodness sakes he was sitting cross legged on the couch with his notebook taking notes …. Did this nurse not think this was a weird situation?) it came time to ‘sign up’ for hospice.
I remember Trey looking at me and asking
‘Thomas, do you have any questions?’
I was frozen. I didn’t know what the hell was going on. I could not even process anything. I remember looking around the room thinking, am I hallucinating? Is this really really happening? What kind of test is this? … I could not even think, I could not make sense of anything. Everyone was talking, and I didn’t care what anyone had to say. I remember Trey & Brenda agreeing that hospice was not needed, thank you goodbye. And while a large part of me was like hell yeah-you tell her!!! The other half of me was reeling… what in the HELL was going on.
Up until then, right at that second - EVERYTHING that Dr Orcutt said/suggested had been etched in stone. It was law. My mind was just blown.
HOW COULD HE HAVE GOTTEN THIS SO WRONG???
It wasn’t like this but it honestly felt like the lady from hospice was being tossed out. Don’t let the door hit ya on the ass, take all your paperwork with ya, get out.
I honestly feel like somehow during that meeting I decided NO, I needed to know what was going on. Why would the Dr send hospice if there were other things to do? Why would he give up like this? Does he even realize what these people do? Did he make a mistake? Did we make a mistake? Believing in him? I needed to see Dr Orcutt, I needed to understand what in the HELL was going on.
I just remember sitting in this chair thinking to myself, I am going to be alone. No one will even listen to me, and I’m the one that’s going to be alone. I wanted to know the truth. I needed to hear it from the Dr. if there were more treatments I would have been the very first person to make Trey sign up. I did not care ever, if there was a chance- he was doing it. Anything,sign him up. But, now the dr had said hospice, and he had lost his mind??? What was going on?
I felt alone. I was scared. I could not handle any of this. I wasn’t even sure this was really happening. Two weeks ago I was still in rehab. I could not even process this mess.
I think I shut down at that point. I didn’t want to hear anyone’s opinion about anything. I felt like I had been lied to all along about Trey being ‘fine’. I felt like Trey was being taken away from me, so unfairly, and everyone was just like ‘Oh Thomas had a stroke, he can’t handle anything’ I felt like I was being pushed aside because clearly I did a bad job of caring for Trey.
I didn’t trust anyone in that room. I didn’t know what was up, down, left, or right. They could have told me the sky was blue, and they were lying. I remember for some reason I wanted Missy there. As fast as possible. I didn’t care what was going on, or what issues there were JUST F@&$ing get here. I needed to see her face, hear her voice. I don’t know what I thought. I just felt like she had to be there. RIGHT THEN.
I felt everything. ANGER, fear, excitement, Confused, self pity, defeat, lost and alone.
To say my world was crumbling is such a massive understatement. It had massively imploded, and then during the recovery…it kept happening over, and over , and over.
This is where I feel the most alone. And it’s really really hard to describe.
I hate saying, Or hearing that I have been through so much.
But, I feel like I missed SO much. I was distracted and missed everything. EVERTHING.
And so now even though I’m not… it feels like I’m going through all of this alone. I was thinking yesterday about why I keep circling back over and over and over. Because it honestly drives me insane.
I texted Treys sister, because I was just writing about wanting her here right then. Also, she doesn’t sugar coat anything. She says what she thinks…easy or hard it’s coming out.
While texting back and forth about different things that it could be I realized something.
In the past anything that was bothering me - I would talk to Trey about it. Every night while making dinner. We would talk about our day, jobs, to do lists, problems, solutions…basically everything.
When something didn’t make sense he would talk through it with me. Until I got it, or he got tired of me not understanding and he would tell me to just get over it. But, we would talk over everything. Now…
I write it all out…but I stay in my own head with everything, always, and it spins around on a loop. Over and over and over.
Just having that very brief text chat with missy…made me look at everything in a totally different way. I miss that talking/running ideas/thoughts. I think that’s probably the biggest thing I miss about Trey. His ability to talk me through things. His ability to take ANY situation easily able to handle. His ability to make me see things in a totally different way.
He made me realize that I can not hold things in…and had to talk about them. He made me realize A LOT.
And now I have to realize how to continue all of that…on my own.
Hopefully realizing that…is the first step to stopping this endless loop.