“The only way to make sense out of change is to plunge into it, move with it, and join the dance.”—Alan Watts
It’s always challenging for me when Vernon moves to a new spot, because I feel the need to be there as much as possible, and I just cannot be, not with my other responsibilities. At the last place (Kindred) I was able to fall into a weekly routine that allowed me to be with him only every other day or so, and that felt pretty balanced and healthy. But here we are again…another transition. It’s not like I haven’t been learning to be flexible with these things. It’s not because I worry it won’t be safe for him there, that he isn’t where he next belongs. Lately he has been aware enough to ask questions about his surroundings and what is coming next. So I do want to be there to get some answers, to get a sense of the place. But mostly, I want to be there with him because he doesn’t know anyone else yet.
Maybe I shouldn’t be too concerned, as when I asked him today where he was, he said: “I’m home.” Now he understands that it wasn’t our house, but he seemed to accept it as his new home…for now. After a staff member came to clean him up earlier, he said: “Thanks, I trust you.” I probably shouldn’t be too worried about his getting lonely either, as when I visit him, he often tells me stories of conversations he has been having with fantasy friends.
Chats with Eric Gill have come up a few times lately…though he admits that he didn’t get to talk to him as deeply or ask as many questions as he would have liked. Today, however, he admitted that he knew Eric Gill had been dead for many years, though he might still be a good connection to get some design work through. So there is a kind of progress. He has also randomly asked me how may of the Beetles might show up. I told him, if any, only two…as that is all that are left. Perhaps this is a kind of heaven he is in…walking with spirits ever so slightly, then back to earth again when we get him focused on us again. I have found that when he is like this—drifting in and out of memories and names (most of which keep changing as the conversation goes on) — he does get more grounded, the longer I can speak to him. That is, until he gets tired again.
Today was a day full of names from his art college in England. It sounded as if one girl in particular, whose name kept changing, had done particularly fascinating work. Work I would love to look up if he hadn’t kept changing her name. Of course, I hadn’t heard anything about her or most of the name-dropped classmates until today. Both Chris and Pilar mentioned the other day that he kept bringing up things about the French, going so far as translating something he was asked to read into French (a language he learned in primary school, but as far as I know, has not practiced since.)
I understand that his brain is doing a sort of housekeeping after the Tornado that hit it. On days like this, he is a bespectacled and somewhat absent-minded secretary, trying to hold a polite conversation with me, whilst trying to reorganize all the wind-swept files and re-catalog the fallen books, scattered across the library of his brain. It’s all in there, just not in order. I can see he gets frustrated, he admits it. But usually, I just listen and ask questions, not really helping him organize…just keeping him company while he works, keeping him talking. That’s one of the things a wife does, after all: teaches her husband to multitask!
I rubbed his feet and clipped his toenails while he talked to me. It was quite pleasant until I attempted a little physical therapy on his rigid right leg. I know moving locations and staff is always a set-back for Vernon physically, and even weekends can undo the PT’s hard work as Vernon will contract his weak areas all over again. As I tried to straighten his knee, I said: “I’ll stretch your leg slowly, just tell me when it hurts.”
Of course, it was only an inch out before he complained of the pain. I gently tried to move it a tiny bit more, and suddenly he exclaimed: “Why don’t you just put my head in a vice and tighten the clamp! Do I have to stab myself and die before you stop? I told you it hurt and you keep moving it!”
OK! OK! Message received. I know the situation isn’t funny, but his response is. Can I say that out loud?
So much for my trying to do this on my own. I want to help, but you can see why it’s easier to leave this to the pros…even if he doesn’t get to work out his muscles as often as he needs. I am hoping that this place will have some great therapists that really take Vernon on in a personal way, that know how to work effectively and efficiently…and that I can learn a few things from as well. And more importantly, that he can learn from.
I was informed this morning that Vernon would indeed be transferred sometime later today. Because were out that way on an airport run later in the day (Bon Voyage, Mom and Dad!) Justine and I decided to drop by to check out daddy’s new digs. Good news is: he will have his own room for a bit. Bad news: that’s because he is on MRSA isolation again. Though the nurse we spoke to suggested it might be only a few days till the meds kick in, this was sad news for Justine because isolation means that yet again, no children under 12 are allowed into the rooms. We waited for a couple of hours so we might at least greet him on his arrival, but eventually, we left without seeing him. Justine was quite sad about this. These rare visits are always special to her.
From what I understand, once he is out of isolation, these guidelines will drop and she’ll be allowed to visit his hospital room, just like her big brother. It is the next big thing we will be looking forward to!
Justine has been on a ‘songwriting’ kick. Drawing pictures and squiggles in place of letters and words, then reading them out in song. She ‘wrote’ him a couple tunes for me to record for him. I played these for him yesterday and he smiled, obviously touched. He even finished the line as she sang “chinny, chin, chin.” An unexpected lyric, but worked for him.
Here is a smattering…
“Songwriters write songs, but they really belong to the listener.” —Jimmy Buffett
As usual, as soon as we start to make plans for a move for Vernon, some unforeseen challenge comes along to upset them. Yesterday morning I was told by our case manager that he would be moved to the Santa Ana Carehouse that very afternoon, only to have her call back later to inform me they had declined him after all. Apparently he wasn’t quite ready for that level of care. But in the same conversation, I was told he had already been accepted into Newport Subacute (don’t worry if you can’t keep up: all these names of care-levels confuse me too.) Now its just a matter of getting a nearby dialysis center lined up and he should be moving there by early next week (at the latest.) Or so they say now.
But while that is still up in the air in the future, I can share some of the fun we had with Vernon today.
I got to be there while Pilar, the Speech Therapist, gave him a variety of food to try. Now, the old Vernon loved a variety of flavors, but she is having a difficult time getting him to try new things now. His tastebuds haven’t come back to life yet, I guess. Here is an example of his trying lemon yogurt. Hilarious.
She next tried Apple Juice, which is all he able to drink now, as it has some sort of thickener which makes it easier to swallow.
Then she gave him peanut butter, which was also pretty entertaining to watch. It was a good exercise as he had to really work his tongue in order to unstick it from the roof of his mouth. Eventually, when he was able, he said: “This doesn’t taste like peanut butter.”
When Pilar asked what it tasted like, he said “Something from the bottom of a truck!”
He remembered Chris being there yesterday and the rounds on the wheelchair they had taken. He said he’d had a great time chatting with him, and how “he hadn’t really got to know him before, but was enjoying getting to know him now.” This is the first I’ve been able to see his short term memory coming back in such a clear way. Usually he gets his days and memories very mixed up, and rarely remembers what happened the day before.
Chris sent me this video of him yesterday doing memory work with Pilar. He was able to work on even more complex reading-comprehension questions today. Great! Vernon should hurry up and get better…he can help Maki out with his Common Core Math problems so I won’t have to!
I had the chance to visit Vern for a few hours today. He was in a t-shirt getting ready for physical therapy.
We hung out in the physical therapy room with his therapist where he sat up, rode on the stationary bike and worked on a few other critical things. Then we hung out with Pilar his wonderful speech therapist. Then we cruised outside into the sun and in the lobby at Kindred watching Obama speak after getting hammered in the mid-terms. Vern was super interested.
He still has no idea who I am but he is so much like he’s always been, he was telling jokes the way we used to joke together. He even asked me to come back after his nap today. It was really good to hang with Vern today. Can’t wait for him to keep getting closer to San Clemente so we can all see more of him and keep having laughs together!
Yesterday, I stopped by Vernon’s potential new home in Santa Ana for a brief tour.
I was pleased to find that even though it is only 15 minutes closer than before, I could feel the difference. All this driving, though not entirely unpleasant (I’ve got my audio-books to keep me company and I plan to avoid the worst traffic times) still carries a subtle kind of stress. I remember when we moved back to California from the UK two years ago, I realized my greatest reverse-culture-shock came from having to drive so much again. Everyone was literally going at least 60 miles an hour, all day long! I came up with this theory: even if we try to keep our minds relatively quiet and focused, we are still moving faster than is natural to our bodies…and since we are required to, living here, we think nothing of it! But I think it takes its toll somehow. Don’t get me wrong: I love transportation, and I admit I’ve left a huge carbon footprint when it comes to travel, but I think that a habit of too much driving does effect our stress levels and psyche eventually. That said, Maki told me the other day…he doesn’t mind long driving trips. Well, he only has three more years till he can take the wheel. Wait…what? Yikes! 🙂
Ah, but enough about me and my opinions. Let’s get back to the recovery home I visited. It seemed very nice and bright, and I was immediately encouraged to see so many residents/patients rolling themselves around in wheelchairs. There was a movie room with a group of people gathering already (at 10 am), and I had noticed a team of therapy-dogs and their owners congregating outside. My guide also told me that though there would be both individual and group therapy available to Vernon, his insurance would only cover an hour with each therapist a day. I think that meant: PT, OT, and Speech. I mentioned the problem with Vernon’s eyes that seems to have not gone away with time—they aren’t pointing in the same direction yet. I was told there was no vision therapist at this facility, but that perhaps the speech therapist would work with that issue. Again, we don’t really get to choose our options. As a friend pointed out to me earlier this week, the options choose us.
I admit I am concerned as I think Vernon needs as much stimulation as possible. Perhaps this is where I need to recruit the visitors and helpers that came in the early days of his coma. Remember all that music therapy we gave him when he was asleep? Well, my feeling is that this place will be where he will need his troops once again. We don’t know exactly when he will be moved, but I know insurance wants it to be soon, hopefully this week.
Our social worker at Kindred has suggested I take pointers from the physical and occupational therapists while we are still there…so that I can help him move forward however I can. After all, the next placement from here is…
HOME.
Eeeeek!
Of course it is what I want, but to me it seems he has a lot of recovery to do before he is ready for my home care. I love him, but I’m no nurse.
So…time to up our game. Whatever that means. Let’s pour it in.
Vernon taking his bike-riding very seriously today. Did you know he used to be an avid cyclist? Because of that, he does seem to enjoy this exercise.
Vernon’s sweet sister, Vanessa, and her husband, Paul, have been on hand all week to visit Vernon, so I took some time off to let them have their own experience with him, not just through my subjective lens From what they shared, it was a special week. They admitted being a bit jarred by his state at the beginning of the week, despite following this blog and my letters all along. Apparently, the real deal always comes with an emotional punch. So they got a crash course in recovery. The ups and the downs. Ultimately, they told me, it was a privilege to watch Vernon commit to his trainers in physio and speech therapy, how on the days he was ‘working,’ he was generally in a better mood: less agitated and unfocused. Well, it makes sense: I always feel better on the days I get some serious exercise—and I’m not in a hospital bed all week. I can only imagine its twenty-fold for him.
Vanessa and Paul told me that even over the course of one week, they felt they had a pretty good grasp of Vernon’s current situation. One day, he might be connected and chatty, and on another, he was tired and distant. They told me they learned to “just go with the flow.” That is a lot to learn in a week, I’ve got to hand it to them. They were fantastic. They had also noticed that his clarity and memory (at least the long term) seemed to have strengthened over the course of the week.
My own brother and sister-in-law also came on Sunday to visit Vernon, after a weekend at my parent’s house. Here is a picture of Hyatt and his lovely wife, Nicole.
Apparently, I was out of the room when he committed us both to a bike ride up to the Bay Area to visit them. I would, of course, have to ride as an escort. What? It’s one thing for him to have to get into shape to ride that far…but ME? I may or may not have have promised him my support.
My mother visited today as well. She tries to make it up once a week if she can. I often think they have more in common than I do with either of them. No wonder I love them both so much. The math of love. By the way, its her birthday today. Vernon didn’t seem to get that part.
And here is Maki. Who can top Maki when it comes to visitors?
Vernon did have some wise advice for him today though: “Don’t make conversions…I mean, conversations, with GIRLS.”
Hmmm…I wonder at what point Maki will stop looking at his father as a giver of wisdom. We’ll try again next week.
A couple of high points today that I experienced:
I got to witness Vanessa sharing all the photographs she brought of Vernon’s youth with him. He seemed very interested in the old pictures of himself in a variety of football (soccer) kit, dependent on the year.
It was fascinating to watch him try to make connections with his past through these photos. The short-term memory may have a way to go, but the long-term certainly seems alive and well. It seems it was the perfect timing for Vanessa and Paul to visit.
And the next high point, honestly, was how he responded to ME when I arrived this morning, after a four-day visiting break. I had been advised, up till now, that he would be totally in the moment, with whatever he is dealing with that particular day. He wouldn’t ” miss” people after they had left. He wouldn’t understand the passing of time as the rest of us do.
But when I arrived in the room today, Vernon lit up with the sweetest expression. He seemed so surprised and happy to see me again. I can’t be sure, but I think I saw his eyes well with tears, and he told me how he had “tried to remember” me as much as he could. He told me it was harder in the moment when he “wasn’t working”He hugged and kissed me with such celebration, I almost felt bad for taking so many days off.
I think he is ready to move on. He is bored when he isn’t doing therapy or entertaining visitors or sleeping, but it is still confusing for him. But I do believe, as I always have, that overstimulation is better than understimulation. Let’s give him the choice.
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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