by Allison Moore | Apr 12, 2016 | Day by Day |
One can get a little nonchalant by medical stuff after awhile. Even to the point of not even noticing things happening. I guess this is the result of trying to ‘pace myself.’ Hmmm….
Today, Vernon was pretty good. He didn’t squirm too much at first. And he recognized me by name when I arrived at his dialysis station. “Hi Ali!” He may have smiled behind his paper mask. Then to the attendants: “That’s my girlfriend and I love her.”
After that, he forgot my name again, and when asked, would start a list of hopefuls: “Julie? Juice?”
He sat pretty still as we chatted off and on for a bit. Then I noticed his g- tube was missing. It was the strangest thing: I was with him the whole time, but I hadn’t noticed him pulling it out. He must have just yanked it when I was reading to him or something. He didn’t seem bothered, nor did he remember it coming out. (He’s pulled it out many times before, but I always assumed it was intentional because it irritated him.)
I knew he’d have to be sent back to the ER to have a new one placed, so I went to phone Mesa Verde for further instructions. “Should I have the pick-up ambulance drivers change their route and take him straight to Hoag?”
But as I went to dial, I saw a missed call and voice mail from the care home from 1.30am last night. I had totally missed it (thankfully.) The message informed me that Vernon had been sent to ER just LAST NIGHT because his g-tube had to be replaced. This was a brand new tube! Another thing I’d missed.
I noticed numbers on his crisp white wristband: Hoag Hospital Newport, April 12, 2016. So this would be his second visit in 12 hours, that has to be a record…for him, anyway.
And that was it. They took him off to get fixed up. I know for sure this is one procedure nobody needs me around for, so I went home.
I got a call from Mesa Verde about 5;00, saying he’d returned, and that whilst at the ER, he had fallen out of the bed. There was no broken skin, I was assured. I guess if you are going to fall some distance, best to do it in the ER. I did momentarily second guess my nonchalance about attending every ER visit with him. Perhaps he does need someone there with him each time.
But then I shrug it away. “Pace yourself,” I say.
by Allison Moore | Apr 11, 2016 | Day by Day |
I’ve been asked to explain more about last night’s illustration. I’m not sure where to start with my update anyway, so I suppose that’s as good a place as I can think of.
“Amnesia.”
I painted the picture above, I was thinking about amnesia—not just a little absent minded forgetfulness but a full-fledged loss of identity. In the early coma days, I did a few small paintings with the theme of underwater divers, mostly because I saw him trapped underwater, in another world, plugged into a breathing apparatus. So here our diver is again, still trapped below but standing, while clues of his past fall from the surface. Records, CDs, pictures, letters, books, photo albums pile up around him and yet, he doesn’t recognize a thing. If anything, they just clutter his world like some sea-dump. He looks so alone.
The last couple of weeks have shown a dip in Vernon’s behavior again. The people who have faithfully been tending him will probably not agree that it’s a huge dip, as they have seen Vernon act similarly off-and-on all year. It seemed for awhile that his short term memory and his ability to accept the reality of the situation were brighter than they had been. I was able to have somewhat intellectual interactions with him. He seemed emotionally warmer. But the last couple of times I’ve visited him, he seemed foggy again, with his eyes mostly clenched shut.
On separate days last week, my mom and I both had arguments with him over whether he was about to give birth to a baby. We’d say no…and he’d become angry. I think he was trying to make sense of his discomfort and the setting. Yesterday, when he seemed less agitated, I brought it up again, almost as a joke, thinking he would have forgotten about that or at least recognize how silly an idea it had been. “How do you know I”m not!” he insisted. “I might be!” Never mind, then.
He’s been complaining about thirst and wanting water again. This is something we haven’t seen for awhile. When I try to explain why he can’t drink, he doesn’t remember that either. And when I’ve allowed him a couple drops, against my better judgement, he doesn’t remember to drop his chin to his shoulder like he’d learned last year. If anything, he resists following my help at all. Likewise, he insists his right hand is more useful than his left, and refuses to hold the pen or paintbrush or cup in the side he worked so long to strengthen.
He still thinks he can go home with me every time I leave, and becomes angry when I say I can’t. He believes he can walk. He believes he can work. I asked him yesterday how long he thought he’d been there. “One week,” he said.
I bought him a CD of a band that a year or so ago he remembered fondly (or said he did.) He didn’t recognize a single song.
When he called me “mother” at his bedside, I asked who he thought the CNA was. “The teacher,” he said. When I asked him where we were, he replied: “A school.”
Again, we’ve seen all this before. But whenever I see it consistently again, I realize the ‘hopeful’ time is over again and this is most likely what his life will be like till he goes. His brain just can’t make those connections and with his boring life in a nursing home, he isn’t able to improve. But even if we worked and worked on it, if we left him to his own devices for a week, it would quite literally slip his mind again.
Vernon’s condition is much like someone with Alzheimer’s. Dementia is often a symptom of Traumatic Brain Injury—if not right away, eventually.
He wondered why I didn’t bring the kids yesterday. I told him he’d been acting too mean the past few days, I hadn’t wanted them around till he seemed calmer. Vernon apologized sadly, sighing: “I don’t remember that.”
Further reading: Here is a fascinating page that explains they types and symptoms of Amnesia and memory loss.
by Allison Moore | Apr 10, 2016 | Day by Day |
by Allison Moore | Apr 8, 2016 | Day by Day |
Since it was Spring Break, the kids and I decided to visit my brother’s family in Palo Alto. They’ve lived in the Bay Area since my brother started his PhD at Stanford (yes, I’m proud) and though they’d made the trip south many times, we hadn’t gone to see them in their world. Also, I wanted Maki to see San Francisco. So the three of us stuffed ourselves, our clothes, plush animals, camera, and guitar into the little clown car and drove the the 425 miles north. Maki has become my co-pilot with his sharp navigation and front-seat DJ skills. It’s a long drive and music is vital.
We didn’t take the longer scenic route, but I have to say I enjoy seeing the agricultural heart of the state. As one writer says, driving the 5 is a meditation on the state of California. It’s easy to forget how huge the land is: size is usually out of context when we think we are just one of fifty states. But driving that long mostly-flat highway for hours does give a person an inkling. Did you know that California is twice the size of the whole United Kingdom, geographically speaking (with a little more than half the population.)
It was beautiful, greener than I remembered seeing the land for a long time. The farmers weren’t the only ones grateful for this year’s sporadic rainfall. And with the two kids all tucked safely near me in our little car, I felt blissfully whole. I remembered ten years ago, almost to the month, I took another drive to see my brother and his wife. This was before they had kids, and they lived in Monterrey. I had Vernon with me, and we took another route, so I could show off the majestic coastline which might provide romantic opportunities for him to propose. (My grand scenic plan failed, by the way.) Here I was again, a decade later, driving up to see Hyatt and Nicole, who now how a full house of their own—this time without Vernon, but it wasn’t lost on me that without him, I wouldn’t have these two great kids in the car with me. My whole life fits in that Mini and the truth has come to this: I find such comfort and joy in that specific tightness. We have music, a bank card, a roof over our heads, doors to open and close, and the open road before us. And such a great state. I am blessed among women.
When we got to Palo Alto, where our Bay family live, the kids were thrown right into the cousin mix, stretching their bones on bikes on the cul-de-sac. Maki is older, so I made sure he got time apart, but he is so great with kids, and of course they all adore him. Justine immediately attached to her favorite cousin (well, the one she knows the best) Evera, and stayed stuck with her till it was time to leave a few days later. We went to Chuck E Cheese for our welcome dinner, the party had begun.
.
It’s one thing to visit with friends, another to stay with them. You certainly get to know and love people better when you are invited to live there for a few days. What a privilege it was to get to know them a little better, to see how my nieces and nephews are growing up, to create new memories, to appreciate Hyatt and Nicole even more than before. I just wish it was a drive we could take more often. Hyatt took Maki into the city one day, where they did some classic sightseeing and spend some guy-time. They even happened to run into a cousin of ours on her lunch break. I love when the world gets smaller.
Hyatt, being the kind-hearted guy that he is, asked me: “So when are you going to move in with us?” I know it’s not possible, but I was deeply touched that he said that. “Taking care of each other is what families are supposed to do,” Nicole added.
I’ll sign off here and use the rest of this space for a photo gallery from our family time. No big tourist attractions to see here, but a lot of lovely kids. Thanks for your hospitality, Hyatt and Nicole. We love you. In the words of Evera and Justine fondly (if a tad dramatically) calling out to each other as we drove away: “We’ll never forget you!”
by Allison Moore | Apr 3, 2016 | Day by Day |
The day started out great. Vernon was happy to see me when I got to dialysis. He even complimented my feet when I walked away to ask a question and came back. “You’ve got beautiful feet.” I was wearing heeled sandals, so maybe he actually meant he liked my shoes.
I laughed. “Really? My feet are one of my least favorite parts about myself.”
“I think they are so beautiful.”
“Vernon, you are so sweet. You always make me feel so loved. You even like the parts of me that I don’t like.”
“I do love you.”
“I know you do. Thank you.”
It’s amazing how love is still there. And his ability to express it. This reminds me of a story from the early days of our relationship. I’ve always fought against this strong cowlick on my forehead. I’ve long hated the thing, blaming it for too many bad hair days. One night over dinner out, he noticed the hair sticking up funny and commented how cute he thought it was. Again, I said: “Really? You are crazy!” But inside I remember thinking, “I will marry this man. He loves the parts of me I hate.” (This is just one example, by the way. It happened with other things too.)
The morning continued well. We were able to sneak a call in to his sister Vanessa in the UK. It was short, but sweet…and the first time he’d been able to connect by phone. All the complications around him have made it hard to plan for such things. He also enjoyed looking through his Facebook photo album. “I love my photos,” he said. “We really should have more pictures taken.” We reminded him that he used to hate having his photos taken. No matter, appreciates them now!
It was almost time to be taken off the machine. The ambulance was waiting for him and the nurse-technician started to disconnect the tubes; this is usually the part he looks forward to—being done. But he rolled away from her as if he didn’t want her touching him. His expression changed, the rolled whites of his eyes glaring under his brow. I thought he was making a weird joke or had a sudden mood swing. “Vernon, come on. Work with us, please. It’s almost time to go… Vernon? Vernon!”
His body had gone stiff and his skin lost its color. It was about a minute and a half before he started fluttering his eyes a little and his breathing returned to normal. It had clearly been a seizure, and none of us had seen this with him before, though he has had moments of random “brain freeze” but not for some time now. And this was more significant.
He seemed very tired after that, returned to a sweet and passive version of himself. I asked him what he thought had happened and he mentioned something about a dream. He only makes sense some of the time anyway. I called Mesa Verde for advice. They told me it would be best for the ambulance to take him to ER instead of straight home. I felt torn because I had company coming and also had to get back to the kids. I’d just spent last Sunday afternoon in the ER with him, but I can’t go every single time. And it’s not always necessary for me to be there. This is just the sort of thing that happens before I go away. I’m going anyway.
I might have panicked had it lasted longer, but I remember watching his seizure, part of me trying to help and part of me thinking: “Maybe that was it. Maybe our conversation today was the last good one I’ll ever have with him. I hope I don’t forget it.” Lately, I have been thinking that way whenever there is a dip. Maybe its a coping mechanism. But we never know. It might be the truth.
I called the ER when I got home. I asked for Vernon Adams and someone gave him the room phone. Vernon was great: “Hi, Gorgeous! How are you?”
I told him I needed a doctor or a nurse, was there someone there? He kept putting the phone down and calling out into the hallway. “Hi. My wife needs a nurse or a doctor!” Then he’d return. I found it so funny. I finally reached my husband by phone and its not him I wanted to talk to. Why is the humor found in the medical world basically the best ever? Justine and I found this conversation (it was on speaker) too funny. We were both cracking up. Then he’d come back on and it would start all over again.
So I was in a pretty good mood by the time the doctor took the line. He told me Vernon had a CT scan and a neurologist had looked at him. They could put him on a small amount of anti-seizure medication if I approved, but there really wasn’t any sign that he was in immediate danger. We figured it was probably just a side effect of his brain injury. In fact, I’m surprised we haven’t seen more of these…over a year ago, a neurologist had told me to expect some seizure activity. I told the doctor I’d rather make an office appointment soon and discuss medication, but for now, could we just skip the meds. We are already figuring out the balance of his recent anti depressants. I really don’t want to add another chemical complication if possible. I could be wrong, but I thought I heard a sigh of relief on the other end of the line. I had told him my reasoning, and the doctor agreed with me.
That was yesterday. This morning, I got a call that he had been vomiting pretty badly this morning. I took the kids up anyway. He was fine for us while we took him into the sunshine for a bit. Maki played guitar, which seemed to relax him immediately. And he was very affectionate toward Justine, who absolutely let him. We were on route to LA, so we didn’t stay as long as usual. In the end, it was good because Vernon started feeling nauseous again. The head nurse told me it was probably his body still responding to the seizure, not a sign of the flu or another infection.
But we did manage to get a photo in. Perhaps Vernon (or the kids!) will be thankful for it later.
by Allison Moore | Mar 31, 2016 | Day by Day |
“The proper definition of a man is an animal that writes letters.”
—Lewis Carroll
So…I FINALLY got the important letter that I’ve been trying to write for six weeks out in the mail. I mailed to my attorney on Monday, after he sent a text last Friday, politely letting me know he STILL hadn’t received it.
It was my idea, really, so I’d expected be more on the ball. But it was really, really hard to write.
I wanted to get a letter to the other driver. I put it off for a long time, waiting for the legalities to unfold. I’m sure it would have been a different letter at every point in the journey. But since we are rapidly approaching the two-year mark, the window is closing. The lawyer advised that its best to send it through him.
I had a half-finished version I was mostly okay with—matter of fact and to the point—but then I offered Maki the chance to write one too. I was surprised how quickly he agreed to it—he had it ready to send two days later. But reading his letter made me realize more what he was going through. It was a powerful statement.
He was given one chance to say what he really wanted to say, and he said it well. His letter made me question my own: “If I have one chance to reach out to them, just one page full of words, how can I say it? There’s so much!” It’s not that there is so much to say as much as what I’m feeling was changing so often. One day, I felt gracious and hopeful, and on another, I felt angry or fed-up. The extreme ups and downs of Vernon’s health the past couple of months threw off my emotions and my intentions.
Now it seems that frequently, people in elevated places of society can get away with saying anything they like, no matter how mean-spirited or petty, and suffer no consequence, at least to themselves. But the rest of us don’t get that reality. What we say (especially if its important and we have one chance to say it) DOES have consequences. I can’t count the times I’ve regretted my words after blurting out some emotional opinion. I realized I needed to write a letter I felt good about….one that I’ll feel good about later if it comes up again. And hopefully it will lean more to the side of making things better than making things worse.
But then, a couple weeks ago, when Vernon was starting to show more psychological understanding, I mentioned my predicament with this letter. He said he wanted to read it, and I just so happened to have my laptop with me. I wasn’t sure how much he would comprehend, and I certainly didn’t want him getting upset over something in it. But he was amazing. He seemed to follow pretty well, and then pointed out the parts he thought I should omit. Granted, I knew better to take what he said as absolute wisdom, but it felt good to connect over something like this. So I took those parts out and kept the parts he approved of. Since then, I changed a few more things, but tried to keep the tone of his input. I wrote about Maki, I wrote about Vernon. I tried not to write much about myself. In this way, they both helped me shape what I most wanted to say. They helped me connect.
So it’s done. This big thing on the list. I don’t know if anything will come of it. Vernon reminded me not to expect that. But we’ve put our words out, together as a family. Though we could have each written a hundred different letters depending on the day we were having, we sent off letters we feel good about. It took time and too much thinking (for me, anyway), and hopefully, we made something better instead of making it worse.
PS Thank you to the close friends who read the drafts along the way…and thank you for your feedback. Even with Vernon’s input, I couldn’t have finished this without your help. Lesson learned: don’t ever write the most important letters alone.
