by Allison Moore | Dec 7, 2015 | Day by Day |
“Life has many ways of testing a person’s will, either by having nothing happen at all or by having everything happen all at once.” —Paulo Coehlo
What a strange, happy, sad, long weekend. It was only two days, but it was packed so full of emotion and activity so, it feels like Friday was at least a week ago. (I’m writing this Sunday night.)
Among other things, I led a workshop (which happened to be attended by a dear out-of-state friend I hadn’t seen in 30 years.) I drove to LA for another longtime friend’s birthday bash, where I got to reconnect with some other favorite art school buddies I hadn’t seen in awhile. I even got to attend a holiday dance recital for one of their daughters, which was very special too. The kids got to have sleepovers with their own friends (a first for Justine). It was the weekend we’d all be looking forward to….and it was amazing.
Maybe that’s why the hard news I received felt at first surreal and then tearfully upsetting. If it had been any other weekend, with myself at home trying to finish up domestic tasks and projects, toting the kids around as I normally do, it wouldn’t be so hard to have seen Vernon in the state he was this morning, with is his eyes tightly closed, jaw twitching, his body agitated, a little more confused and forgetful and easily angered than I’d seen him for a couple of weeks. When you’ve finally had a good run of things for a little while, it can be depressing to have things step backward again. (Why can’t I remember that steps backward are the only consistency in his recovery? It STILL annoyingly catches me off guard when I’ve got my hopes up again.)
But that’s not what set me off, not really. I got some bad news on Friday. Our attorney called to say that the option we thought we had of going to court to get more compensation from the driver of the pickup truck was an option no longer. I never did want to go to court…it was not something I looked forward to it all. It just seemed like a no-win situation, but it also seems more just than accepting the 30,000 of insurance money that he was covered for. In my heart, I’m kind of relieved, to be honest, but I’m also disturbed. This person has been avoiding calls from his insurance agency (and the lawyers?) so it took this long to realize we have no case. We won’t see a cent of that money…which makes the fact that it was so little in the first place weirdly comforting.
But the money isn’t the hard part. I knew it would never be enough to cover our lack of income and medical expenses. It just makes me sad to know that someone who caused so much pain and change (granted, not on purpose) can just walk away as if it never happened and we are left to pick up the pieces. I don’t know how to feel about that. I’m not sure if I’m angry. I know it makes me feel very sad. It still seems like this person should KNOW? Or is that even important…? Is that more of our precious energy misplaced?
I told Maki I was upset about it…and being the wise, forgiving old soul he is, said: “You have to put yourself in their shoes. They didn’t mean to do it.” That’s true…but to not even KNOW about it?
The whole thing has unsettled me. It just seems so unfinished and final at once. Not that I didn’t expect this outcome, either. None of it was going to be what I wanted. It just feels that we have to pay so much for someone else’s mistake. It’s like I’ve finally been given the truth I’ve been waiting for, and all these emotions have been put on hold…now they are coming out at once but are all jumbled and confused and have been given no place to land.
I already mentioned how Vernon wasn’t his best self today (or yesterday, I hear.) This always makes me slightly nervous of what is to come, though I have no real gauge of that yet. On top of that, I heard the news that our beloved Dr. Dan (and his overseeing doctor) won’t be with us at Mesa Verde anymore. I haven’t talked to Dan about this yet, but Joe let me in on what he had been told. (He shares the same doctors.) The three of us sat there around the outdoor tables this morning, commiserating, trying to imagine what kind of doctor we will be given next. He was the first doctor who had actually worked with any of us in all our nursing home experiences. He was our big perk in staying at that home (besides Joe.) I’m very sad.
So it was just too much. By the end of today, I felt like the bottom had fallen out of all the work we’ve done so far. There is more that underlines all of this that I won’t go into. It’s just the three of us now—Vernon, Joe, and myself. We are on this sort of lifeboat together, bobbing away from the ship we were on. We are adrift again. One piece of bad news is hard, but even a great weekend can’t make TWO rounds of bad news tolerable at the moment.
Best case scenario? I’ll just put my newest dream out there in case someone who reads this can practically help—or just really loves to pray for miracles. I don’t even know if it’s possible, but wouldn’t it be great if we could get BOTH of them into another care home closer to San Clemente? I don’t even know if there is anyone who would take our limited insurance at this point. Or if they could travel together. But Joe says he will move. Without Dan, there is no reason to stay there…but I don’t want to leave Joe behind. Joe says he’d move too if we found something.
Things are always bound to change, I realize…and often forced change makes way for something better later. If that happened right away, that would be one thing. But I look ahead, exhausted, and wonder. It sure looks dark at night. Will we find land right away or will there be a lot more tossing of the waves before we do? My answer is the same one I always have: I don’t know.
by Allison Moore | Dec 5, 2015 | Day by Day |
“For small creatures such as we, the vastness is bearable only through love.” Carl Sagan
My dear friend Andrea Ketcham went to visit Vernon today with her son Justis. It had been awhile since she’d seen him (though Justis has come by a couple times with his guitar) as her mother has also been in a nursing home in a different part of town. You may remember wonderful Louise, who suffered a stroke in August. Although Louise shows improvements, she isn’t the same woman that her family once knew, and Andrea spends most of her time at her care home, making sure she gets the attention she needs. We don’t get to see much of each other these days, my friend and I, so I was incredibly blessed that she took time to go see Vernon. It was just as good, if not better, than the spontaneous visits she used to pay me. I love knowing that people still want to be around Vernon, that they still see him as a friend, even if he is different than before. He is still a very special man.
From Andrea:
“We had a great visit with Vernon Adams today! The hit songs were Sunday Afternoon by the Kinks, A Day in the Life by the Beatles, Savoy Truffle by the Beatles, and When I’m 64 also by the Beatles. Vernon sang a lot and was very complementary of our little duet, as was Joe. We spoke of home. Joe said that Vernon had been talking about Home lately. In light of my talks with my mom who is in somewhat the same predicament, I asked Vernon what home was to him. he said home is a place where I can be myself and where I am at peace. I asked him if Home was a place or more of a concept and he said maybe more of a concept. I reminded him of the saying that home is where the heart is. We all agreed that we were home in that moment💗”
Another blessing today was that my friend Alannah, who lives about an hour and a half away from the dialysis center. She had signed up for sitting with Vernon, even though she has a one year old baby and two children in school. Fridays are her one day off work and she chose to drive all the way to help me out with Vernon…or maybe just to sit with him because she cares about him too. (She’s helped out several times before.)
But Alannah lives in the same area that the shooters from the San Bernardino massacre lived. Naturally, she was pretty shaken up. She also knew people who were affected directly. I called to let her know that she didn’t have to drive all that way. I could drop my plans and go instead. But she assured me: “Some wise counselor told me once that when you’re sad or depressed, do something good for someone else.”
I couldn’t argue with that, but I finished up my work as quickly as I could and drove up to meet her with Vernon. If nothing else than to give her a hug. She had already finished the last chapters of “The Magician’s Nephew” and had moved on to reading a National Geographic article about dolphin intelligence.
It’s all so heavy. All the bad stuff. Life. Pain. Fear. Loved ones hurting. Strangers dying. But today I feel incredibly thankful to have friends that find their way to us despite how hard it all can be. It means so much. I hope I can be like that more.
We have such inspiring people in our lives. And there is so much love. Sometimes I’m amazed that it hasn’t run out. But that’s the nature of love, isn’t it? It re-energizes us as we receive it. It re-energizes us as we give it. It’s the secret ingredient that makes life good.
(And a Christmas card from his nephrologist! How many of us can say we got that?)
by Allison Moore | Dec 3, 2015 | Day by Day |
I don’t subscribe to the old adage, “God only gives you what you can handle”—or, more amusing yet, “I know God won’t give me anything I can’t handle. I just wish he didn’t trust me so much.” (Often falsely attributed to Mother Theresa, of all people.)
There have been times I felt like breaking, and in those moments things were more than I could handle. But then someone came along and helped, etc, or maybe I was distracted by some other care, and the moment passed. Eventually, I got tougher and learned not to sweat the small stuff as much. And if I did sweat it, I came to realize that was a choice: my choice to spend my creative energy on little dramas. Sometimes I still do it…makes me feel like a normal human for a little bit. But it doesn’t last long: its a totally guilty pleasure…until its not.
One learns a lot about perspective in a situation like ours…and how often its forced to change. I’m thankful for the years of psychotherapy in my early 30s. (Not that I don’t get top-ups again from time to time.) I learned a lot there about making choices, but I also learned that first, you have to SEE things as choices. It’s the path toward empowerment, I suppose. Or maybe its just a case of growing up in general. (At the time, I felt far behind everyone else.)
Now…back to those catchphrases about God not giving you what you can’t handle and blah-blah-blah. I sometimes entertain the idea, just for fun, and wonder, if that were so, why I got a child like Justine. Or maybe why I’m not a better, stricter parent for her, if that’s what her strong will and intelligence needs to emerge a well-adjusted human. She’s amazing and we are very close, but she is tough to parent, especially compared to her mellow brother. She’s got an argument and a button to push for every occasion. She is an alpha-dog, naturally wired to get out the door first. That said, I completely adore her, and am honored to get to raise her.
It’s good to talk to the other Kindergarten parents and those who have once had strong-willed 5-year olds of their own. I am reminded again that whatever we are going through at home is just a stage, a phase. It’s only temporary. With kids at home, parents have to constantly recalibrate: once we get on top of one behavioral issue, growth spurt, or interest-change, something else happens and we start all over—(we don’t really, but it sure feels like it at the time.)
What does any of the is have to do with these pictures of Vernon? Here is my connection:
Today, Joe and Vernon and I were in a discussion about night-times at the Care Home. Unfortunately, he can be very agitated and paranoid if he’s woken by nursing staff in the night time. The doctor has prescribed Xanax, but now some of the night staff are nervous about going to his room, for fear of how he will act/how they will be treated. Joe is going around to the neighboring rooms, explaining the situation and keeping the peace.
Joe does photograph like an angel might. It’s quite possible that’s what he is.
Vernon responded to the story with regretful tears. “It was an accident. I don’t like being woken up. But I don’t mean to hurt or scare anyone.”
We told him we knew that. That we were on his side and that most people at the home were, too. But then he said the thing that gripped me: “It’s just the stage I’m in.”
How strange. I just blogged about stages again yesterday, but never mentioned it to him. Does he understand recovery stages yet? Who would he have picked that up from? (This is a question I often ask my daughter too, by the way.) “What do you mean, Vernon? What do you mean by stage?”
“Oh you know…like a child goes through.”
“Do you mean the way you are acting now is temporary? Do you think you will get better?”
We then had a brief discussion about CHOICE—how one can either choose to move into a bad mood or a positive one, but how once you make the choice, the momentum happens quickly, and after that, its harder to change things again. I don’t know if Vernon is there yet, but we talked about it anyway. I the way your live your life has so much to do with choice in attitude. Maybe Vernon won’t have the memory power to remember this conversation, let alone choose his approach when the time comes again. But we talked about best case scenarios and practiced them out-loud between ourselves.
The only reason I talked this way with Vernon today is that this is exactly the way I talk with my daughter. We talk a lot about choice in behavior. It helps a little, as she gets older and understands more.. Suddenly I realized how tough I’d become trying to mother her lately. It’s not the first time, actually. I have to say I’m grateful for a high-need child because now I can handle Vernon. I know a little better when to say “no,” though he demands things he shouldn’t have. I refuse to feel guilty. I know it’s just a phase, but how we handle this one together will make a big difference in how we handle the next ones together.
But isn’t that the key…or the pot at the rainbow’s end—that there WILL be a next stage? Nothing is static. We are always changing. All of us. And we can only “not handle” things for a time…until we can.
by Allison Moore | Dec 2, 2015 | Day by Day |
I loved reading Chris Adams’ post the other night. It was great to hear what he noticed that day, with his fresh eyes and perspective. I was particularly interested in this statement: “It is difficult to put a number on his progress. On a scale from 1 to 10…in the beginning he was a 0, then a 1, then a 2. I’d say now he is probably a 5.”
It made me realize it had been a long time since I’d gaged him on the Rancho Scale of Cognitive Assessment. It just so happens, this is stage 5 (on a scale of 1-10):
Level V – Confused, Inappropriate Non-Agitated: Maximal Assistance
- Alert, not agitated but may wander randomly or with a vague intention of going home.
- May become agitated in reponse to external stimulation, and/or lack of environmental structure.
- Not oriented to person, place or time.
- Frequent brief periods, non-purposeful sustained attention
- Severely impaired recent memory, with confusion of past and present in reaction to ongoing activity
- Absent goal directed, problem solving, self-monitoring behavior
- Often demonstrates inappropriate use of objects without external direction
- May be able to perform previously learned tasks when structured and cues provided
- Unable to learn new information
- Able to respond appropriately to simple commands fairly consistently with external structures and cues
- Responses to simple commands without external structure are random and non-purposeful in relation to command
- Able to converse on a social, automatic level for brief periods of time when provided external structure and cues
- Verbalizations about present events become inappropriate and confabulatory when external structure and cues are not provided
I think Vernon falls into most of those pretty squarely. Let’s take a look at Level 6:
Level VI – Confused, Appropriate: Moderate Assistance
- Inconsistently oriented to person, time and place
- Able to attend to highly familiar tasks in non-distracting environment for 30 minutes with moderate redirection
- Remote memory has more depth and detail than recent memory
- Vague recognition of some staff
- Able to use assistive memory aide with maximum assistance
- Emerging awareness of appropriate response to self, family and basic needs
- Moderate assist to problem solve barriers to task completion
- Supervised for old learning (e.g. self care)
- Shows carry over for relearned familiar tasks (e.g. self care)
- Maximum assistance for new learning with little or nor carry over
- Unaware of impairments, disabilities and safety risks
- Consistently follows simple directions
- Verbal expressions are appropriate in highly familiar and structured situations
Typically, he is showing some of those behaviors too. There is a vague recognition of some staff, for example. But those are one the ones who care for him intimately. And I believe he is able to follow simple directions more consistently.
But though these stages are fluid, and a person could move in an out of different levels of behavior at the same time, I think he’s pretty squarely in Level 5. Now I’ve read these charts many different times over the past 18 months, and the funny thing is, about a year ago, I thought he was between a 5 and a 6. I don’t know if he’s in about the same state he was in then or if I just interpret the descriptions differently than I used to. I feel like I’m a very different person every three months or so, so it’s hard for me to gauge.
Yesterday, the doctor called to ask if I would approve a trial of Xanax for Vernon as he has been particularly agitated at night. He knows I have strong thoughts about the heavy anti-anxiety medications. I told him we could try it for a few days, as its causing unrest to Joe, his room-mate. This is hard for me to allow as the last time we used benzodiazepines, I think they were making things worse (and possibly killing him.) I just cannot get there regularly enough to administer alternative medicine and therapy. This is the kind of problem we have by Vernon living in a home. I can not have him home yet because he needs constant nursing care, but at the care home, healing options are very limited. I am taking a few big breaths and saying: “Ok, we’ll try it!” But the truth is, it makes my stomach drop. Joe and the others need their sleep too, and they don’t get any if Vernon is being loud and agitated through the night.
While I’m at it , I’m going to put out another call for dialysis help again too. The next two Saturday mornings, I will be unavailable, and my parents will be out of town. I am looking for someone who is willing to sit with him in Costa Mesa from 10-12. I hate to keep asking. But sometimes people want to do it! I’d appreciate it very much…so would the dialysis technicians (its easiest when people go in twos.) He loves to be read to…especially fantasy fiction. Click on this link if you find it in your heart and schedule to sign up. We have many opportunities (he goes 5 times a week and always requires a sitter.)
Here is a picture sent from my friend Susan and her daughter Belle, who sat with him yesterday. You can see how much he loves “The Magician’s Nephew.” Now if only he could have books and music administered to him all the time instead of sketchy pills.
PS I don’t entirely have problems with medications in general…but I think people with neurological problems have a different reaction than others. I shouldn’t generalize, but this is what I’ve seen to be true in Vernon, and I’m researching whether its true in others with TBI, etc. However, I’d like to be pleasantly dissuaded.
“Mental health is not a destination but a process. It’s about how you drive, not where you’re going.” Noam Shpancer
Update: Since posting this, someone has signed up for Friday the 5th. Thank you, Barbara! I have posted dates through January on the new Sign Up Genius Calendar.
by Allison Moore | Nov 30, 2015 | Day by Day |
Black Friday! Small Business Saturday! Cyber Monday! Giving Tuesday! If all that isn’t enough to get you excited about Holiday Shopping, I’ll give you another: the Second Annual SansOoxygen Craft Fair Fundraiser!
We such a great time last year, we decided to do it again. Several artist have donated some of their handmade items and artworks, but we are still open to receiving more! (Even Vernon’s sister has sent jewelry from England.) The art market/craft fair will be held at our beloved San Clemente Art Supply on the evening of Friday, Dec 11 and during the day on Saturday, Dec 12. There will be fabulous musicians at all hours, and plenty for the kids to do on Saturday.
Just like last year, we hope that this will be a community celebration as well as a fundraiser.
Here are a couple of examples of what will be available. So far, there will be crocheted/knitted goods, handmade cards, most of my old paintings (and some from other artists as well), pottery, stamps, photo prints, drawings, tee shirts, stamps, CDs, hats, metalwork, woodwork, and succulents. How is that for a start?
I’ll also be at the Art Supply this coming Saturday morning—this time to teach a block printing workshop. It’s $75 for a three hour class, in which we will be carving designs into linoleum blocks, then printing them into blank cards to make a set of 20 unique holiday (or otherwise) cards. Each student will receive the tools as part of the cost, and once they learn, they can continue to make prints at home. I’d love to have you if you can make it next Saturday morning.
Please call ahead or sign up online as we will need to know this week if there are enough people to take the class. (We need at least 8.) Here is the link. Here is the number: (949) 369-6603
Here is the flyer:
Both events will be at San Clemente Art Supply: 1531 N El Camino Real, San Clemente, CA 92672
