For the past few weeks, I couldn’t shake the idea that Vernon was dying. And even if he wasn’t dying at the moment, it was probable that he wouldn’t last many more years. His health is so compromised. If he wasn’t getting better, my emotional logic told me he must be getting worse. Without physical therapy or any new solutions, he would just simply fade away.
So I began to talk about it more…not to him, of course. I was careful to whom I uttered these words. They used to gurgle out of me in tears, so ashamed to even think of death as a possibility. Whispering “I’m afraid he’s going to die” eventually was spoken without so much emotion, and last week, after hitting another wall, where it seemed there were no more options for him, I started to believe it.
Actually, nothing had changed. It was just how I saw things. I had come to the end of my hope. All this running around, trying to find the next solution, to keep the ball rolling had kept me sane and hopeful all year. A wonderful counsellor I used to see once told me to reason with my fear. Go all the way with it: what is the worse that could happen, really? Speak it…put it out there, hear yourself say it.
Weirdly, I began to feel better. I wasn’t carrying around this secret fear. Maybe my eyes were opening up to what everyone else feared all along. I wouldn’t say I embraced the fear, but I certainly got it out into the light. I began to accept the possibility. After all, death is a part of life…we can’t control when it comes, and we can’t avoid it forever. Like I said, nothing had changed…it was ME, I had finally come to a new place of acceptance. I’m only recording that here, because it’s likely an important stage in this kind of journey.
I think the final straw came down when I asked his doctor what his next options were. He said he thought Vernon needed to be in a place with intensive neuro-therapy as well as physical therapy. He agreed with me in that he doesn’t see Vernon improving by staying where he is. It’s a great place for what it is, but they are not equipped for everything he needs.
“Does a place exist, where he can get this? What if I organize a big fund raiser and pay privately?”
“I don’t know where, we will look into it. But whatever you find, you can not pay privately. It will bankrupt you.”
I spent the afternoon with a social worker, calling the handful of Rehab Hospitals that we knew of. Rancho Los Amigos made it clear he would not be a fit. I still couldn’t understand why until I got a message back from an admissions attendant from another Rehab Hospital later in the day. She had already gone to access Vernon, who, thankfully, was in good form that afternoon, following her commands.
“Do you think he might be a candidate?” I asked.
“He might be. I don’t know how much therapy he can tolerate at once, but he did answer my questions and seem alert enough. But you see…he can’t be accepted until you have a discharge plan.”
“I understand the program is only two weeks. Can’t he go back to Mesa Verde when his is done?”
“Absolutely not. They medical system won’t allow him to go back to a skilled nursing facility. He has to either go home with you or go to an assisted living home. And no, your insurance won’t pay for that.”
So these were my options. To let him stay where he is and potentially fade away or move him forward to a place, that truthfully, is unlikely to help him much at this point, at least in that amount of time, and then be out of the system.
In the meantime, Vernon is pining for home. He asks me to take him with me all the time, and it breaks my heart that I never get to tell him “yes.” I do know that I can’t take care of him here and that (even if I could afford it) no assisted living place will accept him while he still needs a feeding tube, among other things.
But like I said earlier, getting some of my fears out into the open, out of my head, freed me up again. I even gently spoke to Maki about it, which wasn’t easy, but seemed important too. When I went to visit Vernon yesterday and today, he looked fine. Not great, not any better, but he didn’t appear to be dying. I was free to hope for him again…accepting the possibility a little more than before, perhaps, but not stuck in despair.
Today I managed to wave aside Vernon’s case manager and ask him his opinion on our options. He told me that as long as we stay at Mesa Verde, Vernon has a bed. He can stay as long as necessary. Once we leave, we can’t get back in, just as the admissions woman told me.
So now it looks like our only solution to having people come to him. Maybe he can get the PT he needs by bringing people in from the outside. I don’t know. But maybe we aren’t out of options after all. I’ll be doing more research, and once we know the costs, perhaps we can do the fundraiser that I keep putting off.
I don’t know how long this story will go on, but we aren’t finished with it yet.