Taking a Break

Sometimes, I post pictures that make me feel better. Sometimes, I post them to make you feel better, if I’m to be completely honest. Like this one. Check us out.

Cute, right? We went out to a local restaurant for a beer. It was a nice night. I could leave it at that, giving you the understanding that Mark and I can relax and smile and things are good. But our moments are rarely that simple. Thirty minutes into our time there, I stepped away from the table to take a phone call from the PCP to discuss Mark’s DNR status. I made decisions that you don’t want to have to make. Then I went back to the table to continue discussing the Rolling Stone Magazine’s newest top 500 Best Songs list with Mark. What did he agree with? What didn’t he? This was me choosing a conversation that I knew would engage but also would be cognitive exercise. When we stood up to leave, I had to remind Mark that he had brought in his walker.

When I added this photo to my computer files, I entitled it, “Not Dead Yet,” which is my theme for my year. I’m not referring to Mark; I am talking about me. Because when you’re faced with your husband going off the medical rails as far as Mark has, you get subsumed. You have to claw your way through most days. You have to build your own ladder and climb it over and over again to remind yourself that there is still a sun, moon, and stars up in the big glorious sky above. And I am committed to doing that, clawing and climbing, for myself but also for Mark and his kids who like parasites can only live if their host is thriving. This host has been slipping on the thriving scale; my caregiving lifestyle is starting to eat through the broadcloth of my own life, leaving me vulnerable to the elements.

Like any good survivor, I noticed this and starting looking for options. At over two years into taking care of Mark and having honed myself into a caregiving machine, there remains no end in sight. This machine needs a break and a tune-up. A real break, one in which I can turn off my laser-focus on Mark and nurture the other parts of me. Mark currently is medically stable, a window I do not take for granted, and so leaving him under the care of others for a few days seemed like a reasonable possibility. I am very protective of Mark, you may have noticed, and for me to get a break meant identifying the best option for his care. If you are a parent to human children or even fur babies, you get it. Your heart locked in, you aim for it all. Their safety and wellbeing is the solid foundation. Then you want layers. Happiness, fulfillment, contentment, joy, love, and on and on. On top of Mark’s wellbeing to plan for, there’s Matthew. At 16, he is the kind of kid that will let the dogs out, eat a balanced diet, and go to school whether I’m here or not. And yet. I want the layers for him. Happiness, joy, love… all the things. Life has been cruel to him, taking away both his parents, and I aim to soften those harsh edges.

I turned to the obvious best choice for Mark and Matthew. Mark’s family of many siblings. I explained the need (Diane recharges her batteries), the desire (Mark is in his home environment and maintains routines; Matthew has another adult who cares about him present). I asked if they could, among them, arrange to stay with Mark for four days sometime this fall. All I can say about this is the facts. I asked. The answer was no. From what I was told, this does not fall into their definition of what a family should be asked to do.

I moved on to the only other option. Yesterday, I placed Mark into a locked memory care unit at a senior living facility. With a thirty day minimum respite stay that I negotiated down to two weeks, the four day break I wanted is now $3,000 long. I am worried about how Mark will fare. The medical practitioners tell me to expect a setback, cognitively and physically. I hope to not get difficult phone calls from Mark. I hope Mark doesn’t get Covid, as this placement increases his risk factors significantly. I hope he doesn’t fall, as he will be watched less than if he was at home. I hope he settles in and finds a routine that works for him. I hope the staff is loving and kind, and that they engage with him and respect him.

This is not ideal. However, I am accepting that this is what I must do, for myself, in order to keep my own health and wellbeing in check. I’ll do what I always do with any time I find: pack it with all the joy, peace, and fun available. I’ll stay home the first week so that Matthew has transition time and a sense of stability. The neighborhood moms will wrap him in love and support like a surrogate family. Then I’m going to leave western Pennsylvania for the first time in two years. I’ll post photos of my trip to visit Alma and Adam in western Massachusetts, and you’ll think, “She’s doing great!” and like all social media posts, that may or may not be the whole story.

My goal is to come back to Mark and Matthew refreshed and energetic for this continuing journey. Because whatever the hurdles, keep going I must.


In a non-religious sense, I feel “resurrection” is a fair word to describe Mark’s last two weeks. Something has changed. The logjam in his brain has cleared. Maybe his neural network has been quietly and methodically establishing new pathways around the grey matter obstacle course. I imagine it like a whole classroom of kids working to make a big connected circle, stretching and stretching to reach each other’s hands until finally, they close the loop. Mark had been pretty shut down since his surgery in early May. After he finally came home, it was not a static shut down, it was progressive. Progressively worse. He grew more and more inward, like a seedling retracting into the shelter of its seedpod, until he spent the majority of his time sitting quietly, watching the hummingbirds.

When Mark went into the EMU (Epilepsy Monitoring Unit) in August, I warned the staff about all the ways he could hurt himself. He could fall. He might not listen to them. He might try to escape. He might need a room sitter. None of that happened. Instead, Mark lay in his bed for eight days, staring at the window that had a terrible view. Or at the wall. Or at the clock. He was utterly content, until he finally decided it was time to end the “experiment,” as he called it, and go home.

Maybe those eight days of rest were what he needed. At the EMU, he was constantly connected to monitors, including the EEG and a 24/7 video feed. Sometimes, a voice would come over the loudspeaker telling him to stop scratching his head. Staff brought him his meals, checked on him periodically, and then they mostly left him alone. They slowly tapered his seizure medications, watching for clinical (meaning, behaviors they could observe with their eyes) seizures. It’s not enough, they told me, to see the brain waves doing a different dance. They have to put together the EEG data with clinical observations to figure out the full story of where Mark’s seizures are originating.

What’s it called, the idea that if something can go wrong, it will? Murphy’s Law? Over a few days, they fully tapered Mark off his seizure medications. The little voice came over the speaker, trying to agitate him into sleep deprivation in order to trigger a seizure. Nothing. Abnormal brain waves? Yes. The guy has a dead spot of brain tissue and not all of his skull, so his brain waves are going to be different. But abnormal brain waves that are epileptic and have clinic presentation? Nada. So when Mark said, on Day 7, “I’m ready to go home,” the epileptologist and I both shrugged and said okay.

This is not 100% a bad thing. If they had figured out where the launching pad is in Mark’s brain for seizures, that would put us on a new medical road, the end of which would be offering us brain surgery to remove the bad part. Of his brain. And so, this actually saves me from that TERRIBLE option. From that TERRIBLE decision. And no, it doesn’t mean he doesn’t have seizures. It means he didn’t have them when it would have been helpful to understanding them.

Mark’s back on the same seizure medications. The ones that control the seizures, except when they don’t. He’s back to physical therapy and speech therapy, petting Robert, and watching the birds. He’s sneaking out back when I’m not watching, and he’s picking the tomatoes and cucumbers I planted next to the patio for him.

On the first day that Mark was in the EMU, I came home to find Michael in the kitchen. “How’s Dad doing?” he asked. I told him it all was going fine. Michael glanced outside. “Who’s going to count the hummingbirds?” he asked quietly.

It’s funny how we get used to and fond of whatever Mark we have. A year and a half ago, we got used to the radiated, exhausted, emaciated Mark. This summer, we got used to the withdrawn and perseverative Mark. Now, I am getting used to the resurrected Mark.

“Thanks for the coffee, Turtle Dove,” he said to me last week. I had forgotten that pre-cancer, Mark used to use any random term of endearment that popped into his head, often never twice.

“Is there anything else you’d like to do today?” I asked yesterday morning. I was filling in the tabletop whiteboard with his daily events, as I do every morning over breakfast. “Go out to lunch,” he said, complete with a specific choice of restaurant. I am used to being the one to pay every bill, but at the end of our lunch out Mark took out his wallet. “Oh, your treat?” I teased. “Yep!” he said. I searched for cash in my purse, ready to sneak a proper tip to the waiter if Mark miscalculated, as he has in the past. He carefully wrote out a 20% tip, and I put my cash away.

Today, we went to Barnes and Noble for a newspaper and exercise. We walked up and down the main corridors; we circled the perimeter. I went to the front counter to buy the paper, and Mark offered to go buy us coffee. I watched as he pushed his walker away from me. The greatest effort of independence he’s made in Lord knows how long. I decided to trust that he could navigate this. Walking, ordering, paying.

People, I just don’t know what to say. This guy. This tardigrade-of-a-man. Ever making a comeback, ever pushing the limit of what life seemed willing to give him.

If this isn’t a resurrection, I don’t know what is.