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.
Unfortunately, he didn’t arrive till 11:15 for his 10:45 start. And then then didn’t get hooked up on the machine for another 45 minutes after that. So it was two hours after I left my house that I even got to go in an see him. I was so mad. I know this happens on days I am not there, and it’s unfair for those people who have so kindly volunteered to be with him to have to extend their time with him, just because someone screwed up earlier. But when I am there, I can a least make a little fuss. I called the ambulance service as well as the care home to get to the bottom of it. There was a lot of shrugging, but it seemed to be that Vernon wasn’t ready in time for the transporters (who did admit to being twenty minutes behind when they arrived to first fetch him.) But it was worse than that: he’d arrived after 11, when the technician assigned to his chair had already gone on break. That’s why he couldn’t get hooked up for so long.
I could only stay till 12:45, which gives me just enough time to get back in time to pick Justine up from Kindergarten in south San Clemente. So he was only able to be dialyzed for one hour today.
Most of the time, things work out well in his schedule, but when they go wrong, it goes very wrong, affecting a lot more people than a morning staffer of one of these agencies realizes. Now that he is getting exercise on some days, I am especially watching the clock, as I don’t want to take the chance of missing out. Fortunately, Vernon has so many hours of dialysis a week, that I believe it’s okay to end early when necessary.
Anyway, I’m hoping to get to the bottom of this problem so it doesn’t keep happening. It’s a tight routine for Vernon, and it needs to stay that way.
The good part?
Well, Vernon was in a great mood today. He was so sweet and romantic, for that hour I was with him. He kept asking where we should live together next? America seemed to win. He told me he’d like us to get married this summer, and then we would move. In those moments, his eyes were so sweet and clear, it seemed as if he was imagining our lives early in our relationship, when those kinds of questions came up. I suppose in some ways, it does feel like we are dating: we see each other for short periods of time and then we go our separate ways, we don’t live together as normal married couples do. I can see the connections he might be making. He certainly was putting on the wooing moves…and I loved it!
Another good thing: I noticed how straight his right leg was. I assume its the recent exercise and stretching attention that is making a difference there. Look how evenly his ankles are crossed.
I did get a call from Mesa Verde this evening. Dr. Kavorian had made an order for Ativan (as needed) to help when Vernon becomes combative (I didn’t get a report that he was that way this evening, but I’d heard this recently from Joe.) It’s a problem, I know, and I want to make things easier on that end for everyone, but after Vernon’s ugly experience with it last year, I just can’t sign off on that drug. I told them no, but agreed to talk to the psychiatrist after/when he looks him over tomorrow. Hopefully we can find something else that works.
“Progress lies not in enhancing what is, but in advancing toward what will be.” Khalil Gibran
The high point of Saturday’s dialysis visit was Vernon’s obvious interest in a book I’d brought him. It was written by a Traumatic Brain Injury survivor about his own recovery. For me, I haven’t always enjoyed reading about other tbi survivor’s stories, because each one is so very different, yet I can’t help but try to compare/contrast Vernon’s to theirs, and usually he ends up losing, with his multitude of problems and the length of time involved. To be honest, it’s usually either a depressing ‘struggle’ or else a ‘miracle,’ which tends to make me jealous. My mind is opening up here and there, and I find myself cautiously interested in more tbi survival stories. I guess it’s just the stage I’m in. But Vernon took the book with some enthusiasm, trying to read it himself. (His eyes are still too wonky—I’m thinking of experimenting with a patch.)
“This man had a brain injury and he wrote this book?” Vernon seemed inspired. It hadn’t occurred to me what a big deal it was for this man to write a book—a man who once might have been at the same recovery stage as Vernon. But it looked like a lightbulb had turned on. I knew he understood that he and the writer had something in common, and it seemed that alone gave him a moment of interested hope. Though I don’t often find other’s stories of brain recovery very relatable…it could very well be that does.
And yesterday, Vernon was a higher strung than I’d seen him all week, which was disappointing because I thought he’d had so many good days in a row. But Joe says he is still losing it at times with the staff, even his favorite CNAs (a somewhat alarming new development.) So that threw me off, of course. But the doctor prescribed his new medication only last week, so instead of fretting, I’ll share a good part of the day.
A new (to me) RNA named Laura, took him into the gym at the scheduled 1:30 time. I know when he is putting up a fight, he can easily be left behind, so I’m finding its important to be there for every session, so I can coax Vernon into going and hopefully help him relax so that he doesn’t lose his session, which is a patient’s privilege, rather than a right. He didn’t want to work because his body hurt so bad, but he managed to get a half hour in on the cycling contraption. He even asked if I’d take his picture!
Justine was the girl of his affections yesterday, since she was hanging around too. Putting on her best behavior, she sat in front of him and kept him focused as his arms and legs rotated. They did basic math problems together. I was so thankful because Vernon was easily annoyed with me and I wanted to show the RNA that he actually could tolerate the exercise.
As much as he shouted about it all in the beginning, I could see improvement since Monday’s session. His right elbow seemed much more extended than it had been, enough to hold onto the handle nearly the entire time. He couldn’t do that earlier in the week. Here is a peek:
Barbara gave a good report on his session this morning, but he did end up in the ER again today for…you guessed it: a replacement G-tube! Personally, I think he’s just so skinny and wiggly, those pesky tubes just can’t stay stuck.
Hoping for good things tomorrow. I’ll be there for both dialysis and exercise. We have to make sure these things happen.
“The space in which we live should be for the person we are becoming now, not for the person we were in the past.”
― Marie Kondo
I’m on a mission! On my quest for organization in my home and in in my head, I’m on the next round of purging useless belongings. It started about a month ago by rearranging the furniture and moving some art around. I realized a little extra space made me feel much better. So I ruthlessly began to attack my clothing and now I’m on to the rest of my things. I admit, I’ve been inspired by Marie Kondo’s book “The Life Changing Magic of Tidying up.” And now that I’m in the middle, I can’t stop.
My mind feels slightly clearer, which has already brought a sense of calm into my somewhat chaotic life. But last week, I felt a surprising burden on my chest as I went through each item in my closet. Now, don’t get me wrong, I am constantly weeding out and donating things I no longer love. But I realized there were some things I’d been holding on to just because maybe I bought it in England or perhaps Vernon picked it out for me. It felt strange to give those things up, but I pushed through my feelings.
“I’m getting my house in order for now and the future,” I told myself. “I don’t need to hold onto the past.” I keep thinking if anything happens to me, I need to have things in order so I’m not a burden to anyone. A little bleak, but I believe that comes with the territory of spending too much time in a nursing home. I realize I’m not so sentimental about belongings anymore…not even books, really. One thought that helps me as I prioritize my purging is that in the moment Vernon’s head struck the pavement, he had no use for any of his things. Not his clothes, computers, car, fancy bikes, books. And since that’s come around, he still has no use for them. In a way, its not a bad place to be…I just wish it didn’t take a brain injury.
I thought I’d already gotten rid of many of his old clothes, but there were still some hanging on in the garage—where there is a stash that Maki likes to pilfer through from time to time. (I’ll be hanging whatever he wants in his closet.) It’s like layers of an onion, this sorting process. I’m a little deeper in now, more ruthless in my throwing out. And I can sense the calm approaching. Something is working.
But it’s not without tears. I keep reminding myself all the important memories are in me. And I have lots of photos, which I won’t be throwing out, but may eventually organize better. I have found some old journals of my own that reminded me that marriage wasn’t always plummy. My heart only remembers the good parts, but it is humbling to look back and recognize sometimes that we weren’t without problems even when we were a normal, healthy couple. Expectations were always a pitfall. And now I don’t have any expectations for him…not even growing old together. Every day with Vernon starts at a sort of ground zero. I’ve heard that expectations are the biggest problem in relationships and that marriage is like an old fashioned scale: when the love goes up, the expectations fall but when the love goes down, the expectations go up. There is truth to that.
I took all of Vernon’s old mini-sketchbooks in which he used to doodle typefaces. I put them all in a box so Maki can have them one day if he wants them. In the meantime, I had fun looking for little messages he might have left. Here is one on his fourth visit to California, probably before we’d started planning our move.
Among games of “squiggle” and drawing that he had done with Maki, here are some samples found in his notebooks.
(I believe this is one of Maki’s, copying his dad.)
And after we had visited the Munch museum in Oslo.
Anyway, I have to trust that these things happened to us, even though they seem so surreal and separate now. I just wanted to take a moment to honor the strange process…lest I forget. (Or throw anything important away.)
“Be careless in your dress if you must, but keep a tidy soul.”
I’d hoped to be there for another of Vernon’s gym sessions today, but the time got backed up till afternoon since there was a queue for the bike. I’d already talked him into working out, which he was afraid would hurt his poor leg more, but the RNA (a different one today) told me that if he yelled too much, she couldn’t take him. So I kept talking to him about his attitude, and trying to convince him to do this for me, if no one else. “Being nice to these people is the only way you are ever going to get out of here,” I told him. “Only then will they give you the exercise and attention you need if you are going to walk—or get yourself around at all. If you want independence, you have to be nice to them and you have to challenge yourself.” Of course, he then felt terribly remorseful for yelling and swearing. But I doubt he remembered my words an hour after I had to leave and he was due at the gym.
Something did happen today that I hadn’t noticed before…I see it as a glimmer of increased awareness, but it may make things potentially harder for a bit if continues. When he was cleaned up and his trousers were changed, he was absolutely incensed! He looked at all of us in disbelief, and tried to cover himself as his diaper was removed. Now, he’s been in his condition for almost two years, dealing with this every single day, but today it was like the first time. He looked mortified, turning away from us all. This happened twice when I was there. And he was just as shocked and offended each time.
I recently met someone who’s father had had early-onset Alzheimer’s. He said that once the family got used to it, the hardest parts were when his dad would have a time of clarity. Then he would freak out, wondering why everyone was treating him with such strange and strained attention.
I wouldn’t have shared that detail if I didn’t think it was significant. Something different was happening in his brain today. In disgust, as the CNA helped redress him, he spat out: “What a cripple!” I admit, my breath caught in my chest at the word. “Who are you calling a cripple, Vernon?”
“ME!” he groaned.
It’s a strong word I haven’t heard in years, certainly not since the accident, and it came out of Vernon’s own mouth. Is this a moment of acceptance? How many does he need to have for it to settle into his memory?
He does remember painting though…and he was in the mood for it, thankfully. Here are the two he made today. (9″x6″ each) He definitely had improved his focus from the last time he painted, a couple weeks ago. He was also more interested in choosing the paint himself, once he got started—and squeezing it onto the palate by himself as well.
And a little video. I could watch him paint all day.
A special cover of Vernon's fav song 'Waterloo Sunset' by friend and singer/song-writer Ian McGlynn. All proceeds support Vernon's recovery! Donate what you can and download a beautiful song in return.
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