I started a blog post in June that looked like this:
“Death by a Thousand Cuts”
What Mark can’t do: Regulate his eating. Have a conversation. Use a phone. Understand a clock. Track time. Understand his limitations. Remember conversations. Remember for 10 minutes what he’s done, where he’s been, what he’s eaten.
What Mark can do: Feed himself. Dress himself. (Kind of – got lost putting on his pants today. Forgot to put on a shirt.) Toileting. Grooming? (Not sure.) Bathe? (Not sure.) Mobility (in wheelchair).
Things had changed so dramatically and quickly with Mark over just a few weeks; I was simply trying to organize my observations. In May, Mark could go outside by himself, retrieve the newspaper, and read it. After his seizure and fall in June, resulting in a broken kneecap and a return to the wheelchair lifestyle, Mark never fully came back up to his previous cognitive baseline. He was unpredictable in new ways. Not all of them were bad: he started parking himself in front of the pantry and grazing on random foods. He decided against the container of nutritional yeast he opened, but happily polished off bags of Doritos and spoonfuls of peanut butter. His persistent aim of finding and consuming any alcohol in the house simply stopped. Non-alcohol calories were welcome, so I was happy with this change, except that it represented some kind of invisible shift that was out of character and therefore might not good. And then some of the changes were obviously not good: he wore dress pants one day because he “couldn’t find” his other pants. If I didn’t turn on Jeopardy, he didn’t remember our nightly habits. He stopped reading.
The “Death By a Thousand Cuts” blog draft title referred to both of us. I dug in and tried hard to keep up and interpret the painful and reductive changes. Mark was going deeper into himself, less able to answer simple questions or even finish a sentence that he might start. Lying next to him at night, I felt his small muscle spasms that indicated seizure activity. His many meds were not keeping up with the electrical storms flaring in his brain.
I read a lot about seizures and brain damage. I watched an excellent 90-minute-long video tutoring med students on the topic of seizures to prepare for their boards. I discussed what was happening with Mark’s doctors. The answer, in short, was we don’t exactly know, and we can never know. Scans showed no tumor growth or other emergent problems. The remaining causes for his decline — seizure meds dulling him out, or brain damage from the seizures — were equally possible, and completely unknowable. The only way to find out would be to reduce his meds, increasing the chance for seizures. And since his seizures are very dangerous, we cannot do that. Therefore, nothing could be done, other than the last ditch option of 50/50 success with the vagus nerve stimulation (VNS) surgery planned for late July.
In late June and at the point when Mark started unlocking the gate at the top of the foyer steps and announcing he was going out for a bit, I decided I needed a break from the 24/7 stress. As caregiver rhythms can align with the cared-for, I sensed my reserves rapidly declining at a rate commensurate with Mark’s changes. I booked him for a two-week stay, starting July 5, at the same senior living facility he had stayed in last September.
Early on July 4, the day before he was scheduled to start his respite stay, Mark again tried to leave the house. “Where are you going?” I asked. “For a walk.” He was hovering at the top of the stairs. “I’ll go with you,” I replied. I carried his wheelchair down the steps as he carefully held the railings and walked down, one step at a time. At the bottom, Mark climbed back into his wheelchair and started rolling towards the car. “I thought you wanted to go for a walk?” I said. “A walk? No, I want to go for a drive,” he said firmly. He kept rolling to the car.
I loaded up the wheelchair and Mark, and I headed south on Rt. 19. I put my “Mark’s Happy Place” Spotify playlist on the radio, and we sang along together to rock and folk from forty years ago. Bob Dylan, Journey, REO Speedwagon. I thought Mark might want to visit one of the nearby lakes we frequent, but he wanted to keep going.
An hour later, I pulled into Wheeling, West Virginia. I’d only been there once before, years ago. I located a waterfront park along the Ohio River, unloaded Mark, and pushed him along the walkway. We looked at war memorials, train line memorials, and a tug boat slowly pushing coal downriver. We watched a stage being erected for an evening concert. Mark was mostly silent. The air was still early-morning cool when we got back in the car and headed to nearby Oglebay Park. We took in the beautiful gardens, and then drove onward to an outdoor BBQ place down the road. Mark ate every bit of brisket, including the bits of fat that we both had trimmed off.
Leaving the restaurant, Mark stayed perfectly still as I stopped his wheelchair next to the car. He looked completely drained.
“Lock your wheelchair,” I instructed. He did.
“Get into the car,” I coached. He did.
“Put on your seatbelt,” I prompted. He did.
Back home, Mark seemed perfectly happy but exhausted. We had had a good day, but Mark hadn’t really reacted to most of what we did. I’m not sure he even knew where we had gone. And by dinner time, he had forgotten we had gone anywhere at all.
The next day, I drove Mark to the senior living community. I simply explained he was there for rehabilitation and rest; he accepted it without a word. Many of the staff people recognized him from his stay last year and greeted him by name as we reached the locked third floor memory care unit.
When I returned to visit the next day, I found Mark sitting outside on the enclosed patio, enjoying the sun. He appeared utterly content; the food was “good!” and the people were “nice!” We visited for a while until he got tired. I pushed him back to his room, tucked him into bed under his fleece Steelers blanket, and gave him a kiss goodbye.
Then I went home and cried. And I continued to do so for days while encountering one serious thought after another. Mark was safe and content in a facility staffed with people acting as a team to care for him. I wasn’t alone in caring for him, as I usually am, and that felt like an immediate relief. Taking a step away from the boulder I had been pushing up the mountain helped me acutely feel how very heavy it was.
Questions and thoughts I didn’t even know I had started to rise to the surface. I had space and time to think. Stepping out of the box of daily tasks related to caring for Mark, I found there was a lot to consider.
The first decision I made was based on the most primitive instinct: an immediate, clear, gut feeling. Sitting quietly that second day on the patio with Mark, the white lattice and flower pots bright in the sun, two red-tailed hawks soaring overhead and the unit cat snoozing nearby, I looked at him and thought: I can’t take him back to the hospital. I cannot. The VNS surgery was elective and outpatient, and therefore much less scary than, well, EVERY OTHER SURGERY that Mark has had. But there is anaesthesia, which Mark is historically not great at handling, and the chance for infection, and the every-three-month monitoring of the device driving us back to the hospital more and more. Also the little part about there being a mere 50% chance of the VNS working, and “working” meant reducing his seizures in frequency and intensity by, optimistically, 50% at best. I’d been so sure, just a month earlier, that this was worth trying. Now, seeing Mark at peace, his body being as whole as it can be, his brain as good as it very well will likely get, the opposite seemed clear.
The compassionate choice would be to not put him through another surgery, and especially one that would cure nothing.
I let those thoughts sink in for two weeks.
They didn’t change.
I canceled the surgery.
The second thought that popped unexpectedly into my head after I dropped off Mark was this: he was exactly where I’d want him to be if I could not take care of him at home anymore.
He. Was. THERE.
This is the facility where my friend has nursing privileges. Another friend, a retired colleague from school, messaged me to say her dad is in the same unit. She was visiting with Mark during his respite, and reporting to me he was doing well. The facility is one mile from our home. It’s small, well-kept, and safe. We’d had a good experience with him there last September.
I worked with these thoughts for a couple weeks. I thought about the losses I already had endured in this journey with Mark, and how both his cognitive decline and his physical body being away felt like unearthing new levels of loss. I felt deep grief. I missed him. I missed the physical him being with us in the house, shaping my days. I missed the Mark I cannot have back, the one before he was battered by cancer and treatment. I’d always assumed that keeping him at home was the absolute clear and best decision for him. How could it not be? I talked to friends and family. One person said, “At this point, what is safest for Mark is the best decision, and it does not seem like it’s safe for Mark to be at home anymore.” I wasn’t sure I agreed. Another friend said, “If you decide to keep him there longer, remember you can always change your mind.” I found resources to read, podcasts to listen to, and kept open to observing my feelings and thoughts as they fluctuated throughout my days. I tried to imagine the possibility of it being the loving decision to keep Mark in memory care. Was I really not able to keep him safe? Could I be a good partner to Mark if I didn’t keep him at home? What was best for Mark? What was best for the boys? What was best for me?
After one week at home, visiting Mark daily, I drove east for a family vacation. On the way into New Jersey, I had a phone session with my therapist.
“Am I being impulsive?” I asked after explaining the possibility of extending Mark’s stay.
“No,” she said.
“Am I being selfish to be to feeling like I can’t do it all to keep him safe and at home forever?” I asked.
I barely whispered my final question: “Can I be done? Did I do good enough?”
“Diane,” she said, “you did more than good enough.”
I extended Mark’s stay by two weeks to see how that felt.
It felt sad. It felt like loss. And in my core, I detected something else. It felt right. It felt like it was time. By all metrics, Mark was doing well. This was coming from a tragic place: his cognitive function was now so poor now that he was not tracking where he was, why, or how long he had been there. And without tracking the hours in the day or the days passing, or a conversation or even a full thought, Mark could simply be.
Mark was always good at that, being present in the moment, and now that is where he truly lives the most. He’s often napping, or on the patio, or accepting staff guidance to play bingo or UNO. He laughs and smiles when they play a game of toss with a beach ball. His answer to how he’s doing is still, often, a solid, “Great!”
And so here we are, friends, a place I did not know we were going. Mark now lives one mile down the road, in a locked memory care unit. That’s where he will stay unless something I currently can’t envision — but am open to — changes. I am living my days mostly as I had before. Exercising, reading, taking care of household things and the boys. Waiting for the other shoe to drop, which is a hard habit to break, and being so glad it’s not.
I visit Mark every day. He never asks to leave, he never asks how the kids are, he never seems sad or uncomfortable.
I’m choosing to look at this as the next stage in a story about love. And that is a conscious choice, in a story that could be defined more by loss than love. There will be a lot of beauty in this stage, too, woven in with sadness. We will continue to create a tapestry of exquisite beauty born from this complicated life and love. It will be clearer from the long view, and on hard days, I will remind myself of that.
This morning on my way into the facility, I stopped at the front desk to make sure they had posted Mark’s picture, as we had discussed. A few days earlier, every staff person I encountered had made sure to tell me, with surprise and wonderment, that Mark had achieved a rare feat; he had escaped the locked third floor and was found wandering on the first floor. He was walking, having forgotten – as he does – that he uses a wheelchair. When I heard the news, I talked with staff and made sure they had a plan for how to keep him safe. And then I allowed myself to feel a surge of joy that underneath all the damage, deep in the hidden corridors of his brain, he’s still my smart and clever Mark. It was delightful and funny. That’s my guy, still the troublemaker.
It was 8:15am when I got off the elevator and walked into Mark’s room. He was sound asleep. I woke him up and brought him to the dining room for breakfast. I greeted the care team and residents I’ve come to know by name, and they greeted us by name, too. I made conversation with Mark and a pleasant couple living on the unit, Peggy and Paul.
After Mark finished his scrambled eggs, bacon, sausage and coffee, I pushed him back to his room and directed him into the bathroom. He brushed his teeth, twice, because he forgot within minutes that he had already done it. I turned on the shower, adjusted the water temperature, and instructed him to get undressed. He looked at me, trying to process, and instead unlocked his wheelchair. I relocked it. “Take off your sweatshirt,” I coached, gesturing to demonstrate. He unlocked his wheelchair again. I relocked it. I pulled his sweatshirt off, revealing that he was, in fact, sporting two sweatshirts in addition to a t-shirt. This clown car of clothing continued. He was wearing, between his two feet, five socks. He had two pairs of pants on. Why? He couldn’t tell me.
After his shower, he shaved one side of his face and I shaved the other. I rubbed lotion gently across his very dry face and forehead.
“What do you want to do now? Sit outside, or take a rest?” I asked when we were finished.
“A rest,” he said, transferring from his wheelchair into bed.
I kissed him goodbye, and then I drove home to figure out how to pass my day.
This isn’t the end of the story. It’s the next part, which includes Mark, my husband, living in memory care, and me, his wife and caregiver, taking care of him in new ways.
Alma, discussing Mark not living at home anymore, asked me how I will adjust. “Well,” I said, “I don’t think I’ve let my identity get too wrapped up in being a caregiver.” Alma let out a guffaw. “Mom. Your Instagram name is ‘dianelovesmark.’” Point taken.
We will have to just keep living this life and see.