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.
I don’t know how quickly the new drugs are meant to work or if they will do the trick for Vernon’s mood swings, but yesterday, he already seemed more relaxed (though his eyes and conversation were alert.) He wasn’t twisting as much as usual, for one thing, and he didn’t dip into anger while I was with him at dialysis.
It happened to be a cold, grey morning for May, and maybe that’s where he got the idea that he was still in England. He kept talking about going to America…and would I come with him?
“I’ll take you to America with me. If we do it, it will go excellently. It will go very well. It will go according to plan. I just don’t feel very well right now so maybe we should put it off for a few days.”
When I asked him why he wanted to leave England, he said: “Because it’s cold and the people here have been horrible to me.” (I assume he means the medical staff…although this could be a
This is severe traumatic brain injury, almost two years in, not much changed in this area for a long time. He has a hard time getting original thoughts, but his mind tries to make sense of things when he gets an idea.
Really, the only thing he cares about is his family. I have been able to sway his dark attitude at times by asking him who he loves. It’s always the kids and me. Always.
I showed him a photo of Justine and a video of her newfound hula-hooping skills. “She really does make my heart melt,” he said, staring. “When she grows up, she’ll have so much to tell me: her friends, her fancies.”
I showed him a picture of Maki. Interestingly, Vernon does always remember that he plays the guitar now. “I’m so proud of him, you know. He’s so good on that guitar. I don’t see him very much. How can we change that? I want to make more time for him.” Then he added: “He is special because he has a guitar.”
So he gets his thoughts mixed up still. Big deal. The truth of his heart still comes out loud and clear: he loves his family and he wants to be a good father. Vernon has ALWAYS wanted to be a good father, at least since becoming one over 14 years ago. I wasn’t there for the early years, but it was clear as soon as I met him that Maki was his number one. So I shouldn’t be surprised that even after his injuries, the main thing he still wants to be is a father—a good one, if possible.
I encourage you to take a moment to prioritize your thoughts, if you can. If you could do only one thing well, play one important role, what would it be? We have so much buzz around us, so many responsibilities and so many options that the path can get buried. But if you were at a point where only one thing mattered, what would it be? That’s probably what you should be investing in most. Note to self here…I’ll be thinking about this too. If Vernon can get to the core of his heart with all his disability and extremely dire circumstances, even away from home, I should think the rest of us can too. Take heart and run with it!
Photo taken June, 2013
“The heart of a father is the masterpiece of nature.”
―Abbé Prévost
Tuesday night, I got a call from Mesa Verde, informing me that the doctor had prescribed nuedexta to treat Vernon’s recent mood swings. He hasn’t just been lashing out at me, it seems. There has to be some real problems going on for the doctor to prescribe something without my asking for it. Other complaints must have reached him. So they are trying this new medication out and decreasing the depakote, which no longer seems to be working (if it ever did.)
I also got a call on Monday from the case manager, letting me know that Vernon would be getting a half hour of restorative exercise with an RNA three times a week on Tuesday, Thursday, and Sunday at 1:30pm. I didn’t want to miss the first day, partly because I wanted to see what they had in mind for him, but partly because I wanted to make sure it happened! So I made after-school arrangements for the kids and cancelled an appointment, only to get there and find out he’d already been taken to the gym in the morning before dialysis. I insisted he go in again while I was there, having made such an effort to be there at the planned time. Thankfully, they obliged.
Rudolfo, his RNA, is a saint. He is always patient, never making me feel like I’ve inconvenienced him in any way. He’s the one I’d seek out when I needed help transferring Vernon into the minivan. He talks to Vernon in a kind a even manner, even with Vernon shouting out like a child offended by pain. They both told me that the morning session hadn’t gone well. Vernon said it was painful. Rudolfo said it was short.
That’s why I wanted to be there. I knew if I could talk him down a little, it might go easier. If I couldn’t talk him down, I could at least cheerlead. It seemed to help, as Vernon got through the whole session this afternoon. There were 15 minutes of bending and stretching his left arm—well, trying to. “It’s locked! It doesn’t work!” Vernon pointed out. Then he was put on a two-piece “bicycle” in the gym, where he could rotate his arms and legs at the same time. Vernon was quick to announce that this wasn’t a real bike at all, but we told him that this was a starting place. If he ever wanted to get on a real bike again, he’d have to put up with this contraption for awhile. He didn’t seem convinced, but he managed to go the whole 15 minutes. He quickly gave up on using his right arm, but Rudy said he did much better in the afternoon than the morning.
I cannot regularly go to each of these sessions but I intend to be there for the first week, anyway. I don’t want them giving up on him too soon. It’s hard, when he’s so obstinate and difficult, but with coaxing and constant attention, I think we will see results. If nothing else, he should be more naturally tired by the end of the day. My hope is that in time, he will get used to the routine and look forward to these sessions. He’s not allowed to sleep or excuse himself some other way, as far as I’m concerned— it’s already taken too much of my effort and time just to get this. I want to make sure it gets kept up!
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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