Turning the Corner

Look who wanted to go out to dinner today. Yes, he chose going to the local grocery store a mile down the road, our little Giant Eagle. And he decided it was dinner time at 2:30 pm. When we came home, he took a nap. He just woke up and looked at the cable box. “4:56?!” he said. “What time did you think it would be?” I asked. “2:00 pm,” he said. So logic is not always prevailing. But Mark, my Mark, is a little bit more here than he was yesterday, and a little bit more here than the day before that.

For weeks, I’ve felt like I’m sliding across ice, looking for anything to grab hold of.

I think I found it.

Recovery

In between appointments, we rest. Sometimes, instead of eating dinner, we rest. Often, instead of washing the dishes or folding the laundry, we rest. In the last 10 months, Mark has had four surgeries that were all cranio-somethings and included ear to ear incisions. He’s had his skull base reconstructed. He’s had part of his skull removed. He’s had a thigh muscle transplanted from spot A to spot B. He’s had to recover over and over again. Regain strength. Sustain a will to do so.

This afternoon, we watched the next episode of “Lost.” Jack, the main character whose hero status hides a deep cavern of insecurity, trips and ends up plummeting over a cliff. At the last second, he grabs a root and dangles over the edge. “I don’t think he falls,” Mark turned to me to say. “I think he finds the strength within himself to pull himself back up.” The scene played on. John Locke is suddenly there, lying on his stomach, reaching to grab Jack’s hand. Together, Jack scrambling and clawing, and John straining and pulling, Jack makes it back to the top.

Sometimes struggle is loud. Sometimes, it is very, very quiet.

This week was better. In between the struggling, we rested.

Unanswered Questions

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.

Resetting

Both of my children are trans. They are adults, not children. They are 23 and 24. Their stories are their own, and they are unique. My heart is wrapped tightly around each of them. I remember with one of them, when they told me, and then told me again, and then desperately tried again to explain to me … finally something made sense. I was going to go there with them, or I would be sending them off into a life I would never truly know, with a wound slashed so deep that it would stretch from me to them. “I don’t know where you are going, but I’m going there with you,” I remember saying. It may have been my greatest leap of faith, ever. When you have a trans kid, or two trans kids, you have your skin peeled back and then you grow a thicker one. The old skin is the expectations that culture puts on you, your upbringing puts on you. Subconscious. Friends. Family. Religion. Workplace. Gender identities that slip past the narrow boundaries our society allows are deeply threatening to many. Surprising. Confusing. The new skin you grow is understanding. Empathy. A love with a fierceness great and wide. When your kid comes to you and says, this is me, please see me, the choice is clear. You rise or you fall. Too many parents fall. You? You see them. And you hold on tight as they carry you to places you’ve never been.

I feel this way, on the eve of bringing home a wheelchair with Mark in it. I have only one choice. It’s to go with him. He is there. I would imagine that he is just as scared as I am.

I could rise or I could fall.

Me? I am rising.

I will give it my all.

Panic and Preparation

Today. The occupational therapist trained me in wheelchair transfers from bed to chair, wheelchair to toilet, wheelchair to shower chair. Tomorrow, the physical therapist will teach me how to help Mark with steps. The patient care technician, changing Mark’s bed linens, said, “It’s exciting that he’s going home so soon.” “Well, to him,” I replied. My actually mood? This photo.

I’m deep into purchasing solutions. Makes me feel like I’m doing something. More grab bars. A shower chair with a back and arm rails. Shower wands for the two possible bathroom showers he might use. An alarmed mat to put next to his side of the bed so I can sleep without the terror of not waking up when he tries to get onto the bedside commode. A bed railing to help him get up safely. A bell he can ring if he needs something.

Someone just offered me a portable ramp, so Mark will be able to get out onto the patio and sit in the sun. Someone offered to help teach Matthew to drive, which I sadly must pass on to another adult as I can not be sure I could do it anymore.

I am many phone calls into looking for caregivers. I’ve tried to create an elevator pitch out of a story that is a long and tragic novel. It’s hard to summarize. I’ve struck out with agencies but have found a couple women who may be able to come in next week for parts of a few days. I’ve talked to the boys and told them how their dad he will look. How he can and cannot move. The new level of supervision he will need. That I will train them in how to do this when it is inevitably their turn. That today he kept asking me where his keys were. “But how will I get the car out of the [hospital] garage?” He asked over and over, no matter how I responded. Listening, answering, redirection, distraction, diversion. The options available.

I am on high, high alert. Poised for the storm. Trying to prepare. Batten down the hatches. Prepare the fallout shelter. Breathe. Breathe. Breathe.

No Title

I can’t come up with a title for this post. I found out today that Mark is being discharged with a loaner wheelchair, and a permanent wheelchair will arrive in a couple months. Will he ever walk again unassisted? Maybe. The therapists don’t know. For now, the one remaining muscle that attaches his quad to his knee is not firing. He can walk for about two minutes, tops, before the knee gives out. He cannot walk safely, at all, without a person right next to him to catch him in case he falls. He only needs assistance when walking, not when sitting, but with his frontal lobe injury, he impulsively decides it’s time to get up and do something. He still has a 24/7 one-on-one aid in his room, watching him. When he comes home, that job will be mine and the kids.

When he went into surgery, my greatest fear was that he’d have a stroke. That he’d come out with a greater level of need. I thought we dodged that bullet. We did not.

Tonight, I removed the living room area rug. I rearranged the living room furniture, the kitchen table. I removed Mark’s dining room chair. Our wonderful neighbor, Rob, is here installing grab bars for the toilet and a child-proof gate for the top of the steps so Mark doesn’t accidentally tumble down.

Mark is coming home on Friday.

In a wheelchair.

I am trying to figure out how to get him safely into the house.

I can’t believe it.

I’m not prepared.

Here’s how I felt today, when I heard it:

I.

Give.

Up.

Quick Update

Mark will likely be discharged on Friday. He’s making progress in many ways. He’s compliantly working with PT, OT and speech six days a week. He’s still refusing his heparin shot and bloodwork, so his need to stand his ground in order to feel he has some control over his life is intact. At least he’s accepting his other medications. His mood has leveled out quite a bit, thankfully. In some ways, the parts of this post-treatment phase that are about frontal lobe injury are familiar to me. I’ve navigated from where he is now up to a better baseline before. So while I did burst into tears when the case worker told me they were preparing him for discharge, I do know that I can adjust to having this version of Mark home again. In this case, being familiar with it is not necessarily a positive. The tears were because I know, from experience, that it will be a lot. For me and for the boys. The tears were also because Mark cannot walk unassisted, period. The reason for this is surgical. There’s two muscles, I have learned, that connect your quads to your knee. One of those is where it belongs. The other is now living in Mark’s forehead. His knee now buckles when he walks, and it does so unpredictably. Will his other muscles figure out how to compensate? I have no idea. So for Mark to get up every morning, for him to get to the couch, for him to get to the dining room table for meals, for him to get to the bathroom, will require a person holding onto him. This is a new level of … well, I don’t know the right words for it. I’m too tired to come up with them. You can fill in the blank. Bad? Hard? Absurdly bad? Absurdly hard? Mark is coming home. I feel like I should be preparing. And I am, to the best of my ability. In between bouts of lying in bed and staring out the window, trying to figure it all out.

Low

I hit the emotional wall this week. I feel like I often try to write honestly about being a caregiver. I feel like I often fail. There are too many dimensions to caregiving. To caregiving Mark.

Part of this is because in order to survive this mammoth life curve ball, I spin my mind until I find a positive about a day, a moment, a time period. Part of this is also just my disposition. And of course there are the quiet joys. Yes, I truly can feel content when Mark and I sit in silence, watching the sparrows nesting on our porch.

As I write, I hold an acute awareness that what and how I write affects our family, friends, colleagues and community whose hearts can get beaten down with the tragedy of Mark’s circumstances, and mine, and the kids’. If you can believe this, I quite often dial back the harshness of the situation in my writing. If horror seeps through, it’s likely more horrible that I am even saying. Because everyone, including me, feels better if I’m handling it okay.

But today, I’m at a low. And I’m going to write this post for me.

Next week effectively ends what has been the most significant time in my professional life. Roughly 12 years ago, with my freshly acquired M.Ed., I responded to a newspaper ad and was hired to be a Lower School science teacher at The Ellis School. As a product of public, co-ed education, I was walking into a world that was completely new to me: a small, all-girls, PK-12 independent school. The things I noticed from day one are the things that have stood true throughout the years. People care about each other. The students are seen, known, and loved. The school values community and honors the individual. Each student and faculty member is welcomed to be who they are, to grow and shine in their interests, talents, and passions. We are colleagues and friends who love to laugh and learn together.

Over time, I moved into teaching 7th and 8th grade science and became the science department chair. I’ve been challenged and supported in becoming the best science teacher I can be. It’s a work in progress. I would never be finished. In my times of personal challenges, the staff, administration and faculty have gone many steps beyond good wishes. They have shown up. Meals, gift cards, texts, phone calls, emails. Covering my classes when Mark’s medical appointments endlessly popped up. Sitting in my empty classroom and crying with me when it was all too much.

I can’t do it anymore. I can’t take care of Mark and continue to live this part of myself. Part of this is utter exhaustion. That is not the major part. The major part is that Mark needs full time care, and my job pays less that a full-time caregiver costs. The equation is simple. Mark cannot be left alone. Period. And we’d be losing money by my working. The logic is clear and devastating.

The school, with their unrelenting kindness, is giving me a one-year leave. I don’t know if in a year my circumstances could be any different. If they are, and I can figure out a way, I will go running back to my job with open arms.

Today I toured an assisted living facility for Mark. I looked at personal care and memory units. I don’t know what will happen next with Mark. I don’t know the condition he will be in when the rehab — or insurance — decides he’s maxed out on improvements there. This morning, in an absurd moment of irony, I watched Mark pull velcroed cards off a wall, trying to arrange the letters of the alphabet from A to Z. He argued with the occupational therapist that the “I” was an “H.” He skipped the “O” and went right to the “P.”

After next week, I will no longer be a science teacher. I only will be a caregiver. Every blessing in the world of that privilege does not outweigh the reality of it. It’s an erasure of a huge part of myself, following an erasure of so many other parts of myself over the past two years. The who I knew myself to be, the highs and lows of living, all the complexities. All the freedoms.

You will want to fix this. And I appreciate that. I want to fix it, too.

I can’t figure out a way.