Something about ending last night with the reintroduced possibility of Ativan must have triggered a nagging thought in my head all day. I realized that though the mere mention of the drug causes me to react in a beady sweat, the doctor might have been responding to a complaint earlier in the week. It doesn’t mean there is a problem right now, even though I receive a phone call about it. There are a lot of delays within healthcare, all the little steps of paperwork and its changing hands. I’m so glad I didn’t agree to it, though I felt the pressure on the phone. (The nurse did not pressure me, in fact she assured me that I didn’t have to agree with the doctor, but I felt the pressure of the nurses who have to deal with him when he acts up.)
What was nagging at me was the deeper realization of a major truth that has been the problem all along, but never gets dealt with: Vernon is in a skilled nursing home, which is excellent with supporting his functional needs, but no one there, not even the doctor, is expected to know a thing about brain injury recovery. To their credit, even the neurosurgeons I’ve met don’t seem to know much about it. But this is NOT a recovery home. Or a rehab hospital. This is a skilled nursing facility, where basically, he is kept alive and semi-comfortable—and to be completely honest, the whole setup really in place to help the family more than the patient. I’m just a couple of medical pages and some signatures away from being a full-time, live-in caregiver.
You must understand: I’m not complaining. I think Mesa Verde is a very good care home, and I have no current desire to move him and take our chances elsewhere. But last night, when the nurse told me she’d ordered a psych evaluation for Vernon, I just rolled my eyes. I believe Vernon is in there (and in some ways, he’s showing his deeper self more than ever) but I think he’s being treated as a ‘typical’ long-term patient of such a place would be treated when certain issues come up. I think in this case, a ‘typical’ patient would be an elderly person with dementia and fall-risk (ie: the threat of physical breakdown.)
Vernon is a ‘fall risk’…it says so on his armband. We go to dialysis five times a week with him because of his risk of falling. He rests in a geri-chair lounger or (most of the time) in bed because he can’t be risked in a wheel chair When a patient in a nursing home falls, he has to be sent to the hospital to make sure that nothing is broken. A big to-do is made: the fire department shows up, papers are signed, family members are called, bills are sent out, and everyone becomes even more protective over the patient. This makes a lot of sense when someone is elderly, their bodies already broken down with time and likely to deteriorate more rapidly. Though I think the process has aged Vernon’s body, I don’t think a fall is going to kill him or really even set him back much. And yet this is where the big energy goes in a place like this.
My point is this: though this is our best option under our circumstances, is not where a young person with Vernon’s serious brain injury belongs. We are on what is known as medi-medi, in health billing circles. Normally, except for the corner of renal failure (kidney breakdown) this is reserved for Americans 65 years of age or older.
I don’t have any real reason for sharing all this except to get it off my chest. I have no idea how many people read this blog regularly, but I guess I’m ‘putting it out there’ that someone might have a suggestion of a specialist (that I could ask the doctor to recommend) or anything really? I just feel like there is a Square One reality that we keep ignoring. This may be the best that we can do. I’ve been told that it is. But what if there is more? There MUST be more. Connected people, can you help? Praying people, can you?
All that said, Sandra, Vernon’s regular RNA who has been working him out on Tuesdays and Wednesdays for fifteen minutes in the gym, already seems to be brightened by Vernon’s improvements. Remember yesterday’s straighter leg?
Though Vernon wasn’t at his best today, I’ve seen worse. Here are the highlights:
I brought Vernon a present: new shoes! If anyone deserves them, right? The other day, at dialysis, he pointed out the feet of a(n elderly) patient a few chairs down the row. “I’d like shoes like that!” he said. “I used to have some like that.” He was right. Whatever Vernon asks for (that I can possibly deliver) he’ll surely get.
He wasn’t in much the mood to paint. But he still hashed a couple out. That’s discipline.