It has not been a good week. The transition of Mark from the hospital to home has been rough. How we find the energy to get through each day is unclear. How we get logistically get through each day is unclear. Like gadgets running on a tangled mess of power cords, my reality and Mark’s and the kids’ has been unplugged and replugged in so many times that it’s impossible to sort out how it’s all working at the moment. I’d say it’s working, but not that well.
Yesterday, Mark had a follow-up appointment with the ENT plastics surgeon who did the bulk of this surgery. The doctor came into the examination room and sat down in the chair right next to me. “How are things going?” he asked. I didn’t expect that moment of humanity. Like the raw nerve that I am, I felt immediately stripped to the bone,. I fought back tears. “It’s hard,” I said. “Mark’s doing really well from a surgical point of view,” he said. I knew that. It’s the answer, and not the answer. At all. The medical part explains everything, and it explains nothing.
The Early-Onset Alzheimers (EOA) Support Group on Facebook, and the raucous EOA Zoom Support Group out of NYC, remain the main places where I can connect my reality to anyone else’s. Traumatic brain injury support groups might be more relevant, my brother Dale, a physical therapist, told me. And of course, Mark’s recent rehab stay was exactly there: the traumatic brain injury unit. But it’s the EOA caregivers who are loudly present online, daily, saying HELP ME I AM DYING HERE. The response from the crowd is quick: I hear you. Everything you are doing is your best. This is the worst. You are not alone. We all feel alone. To my recent query — “When your LO is being a jerk to the caregiver, is it worth it to talk to them about it?” — the yes’s and no’s and do-whatever-feels-best balanced each other out. Along with the suggestions for trying CBD products, which I invested some money in this morning.
Because listen, I am trying so, so hard not to lose my mind. Many times a day, I revisit my daily happiness plan. It’s always modest. Bathe. Keep trying to read a book. Get the kids to watch Mark for 30 minutes and water the garden. Yesterday, the happiness plan included my first hike since Mark got home. A new and very competent caregiver arrived to the house. I oriented her to a few things I’d left out in the interview. Which hospital to send him to if she needed to call an ambulance. “If he codes, what are your wishes?” she asked, glancing at the refrigerator in a look I recognized as searching for the DNR. I left. I hiked into the park like my life depended on it. I stopped and ate my protein snack. I pushed on. I stopped by the creek, peeled off my boots and socks, and watched a heron descend awkwardly into a sycamore while I splashed my toes in the water. I took photos of some cool fungi and listened to music. I stayed in the park for two hours, long past my level of energy and the amount of drinking water I had brought.
I came home to the new caregiver reporting that Mark had just been “nasty” to her and to the visiting occupational therapist. I listened. I problem-solved. I apologized. I tried to let my recently freed toes carry enough weight in my tiny world to counterbalance Mark’s twisting moods. I went on Amazon and bought myself a new mushroom identification guide. I took their recommendation and bought another book called “Life’s Edge: The Search for What it Means to Be Alive.”
Mark wants independence. He wants nearly no communication, and he’s giving nearly none as well. I follow him room to room, silently, as he wheels about. I try to figure out what he wants and needs. Today, he did not want help when he slipped and fell back, trying to get out of the bathtub he insisted on using rather than the safer shower chair option I had set up for him. He did not want me to remind him, as he bathed, to wash his chest which has a line of dried blood down it from when he scratched open his neck incision a couple days ago. “Yeah yeah,” Mark says in quick cadence, like swatting a fly when I say, “Try not to touch that,” as he picks at his drain incisions, his temple graft, his neck incision.
We’ve been recently re-watching the TV show “Lost,” which Mark loves. The fiercely independent, loner, lonely character, John Locke, fights any attempt to restrict or define him. “Don’t tell me what I can’t do!” he insists, he yells, when anyone tries to limit him. Over the years, Mark has repeated that line many times, with humor. Now, I hear it in his fight for independence everyday.
Mark never washed his chest. The dried blood will be there for another week.
The worst time this week: Night 3. Mark woke up at 11:30pm, got into his wheelchair, wheeled into the kitchen and turned on the coffee maker. “It’s the middle of the night,” I said, following behind him. He ignored me and drank a cup of coffee. He wheeled himself to the couch and laid down and went to sleep. I laid down on the loveseat. I woke up a while later to Mark getting off the couch and trying to walk to the recliner. I jumped up to spot him. “YOU’RE NOT HELPING!” he yelled. When he was safely in the recliner, I went back to sleep on the loveseat. I woke a while later to the the crash of him falling, having impulsively decided to walk back to the couch.
I forge ahead with making the tiniest happiness plans that I can every day. Mark was okay with today’s plan to get sandwiches for lunch and sit in the car by Canonsburg Lake. We sat eating silently, watching people fish and kayak. We watched the herons living their solitary lives. We watched gaggles of geese, family units combined on land and then separated out on water. Moms and dads with their goslings in loose groups in between.
When we came home, I held on as tightly as Mark would tolerate as we walked slowly into the house. I reminded him gently to take each step up with his bad leg first, as the physical therapist has taught him. As he does not do, often, and falls crashing onto his left knee in pain.
I recently read on the EOA group a meme-of-a-post, something about the succession of roles we take in relationships over time. “Friend, Girl/Boyfriend, Spouse, Caregiver, Nurse.” When unsure of your role, when you have to caregive your loved one, the meme goes, always go back to the earliest place you can access in that list. I’ve thought about that a lot this week. Because “caregiver” and “nurse,” well those are obviously where I am. Can I back up to wife? Girlfriend? How can I be a friend to Mark? Could reorienting within these roles better help him? Or me?
A decade or two ago, I was wading through attic boxes and came across some of my old elementary school assignments that my parents had held onto. There was a journal in which every few days, I had to diary about things I had done. I wrote about going piano lessons, to a friend’s house, to church. I was a young mom when I was reading this, and it made me laugh out loud. Omitted from my writing was any mention of how I got to any of these places, which would have been my mom ferrying me to them. As well as planning them. Reading it when I had two young kids of my own, I recognized how we can overlook and take for granted the folks who make our lives functional. As well as rich, fulfilling, and happy.
Mark does not, can not, see what I do for him. The sixteen appointments — and that is not an exaggeration — that I arranged for him last week, all related to keeping him alive and helping him get better. The one appointment I had for myself, to take a walk in the park, the benefit of which was upended by Mark’s behavior. The empathy part of his brain is shut down. Maybe it will wake back up one day. Maybe not. I can’t let that change how I interact with him, how I take care of him. But I do have to fight how bad it makes me feel, everyday.
Who am I to Mark? What role would he put me in? Friend, girlfriend, wife, caregiver, nurse. I can only hope he’ll find a way to see me as a friend, at least. It would be a start.