2021. You were a year. You gave us continued Covid, which meant we stayed quite separate from the world and others. We were doing that anyway, as Mark continued to need time to rest and recover from a bunch of surgeries. (Perhaps groups of surgeries should have names like groups of animals. A flock of surgeries? A murder of surgeries?)
You gave us endless kindnesses from strangers, colleagues, friends and family. Monthly flower deliveries, texts and cards and emails and calls and Facebook messages. Hot tea on the front porch, laughter and a LOT of cheese shared around the backyard campfire. Moms in our community rallying over and over to bring meals, chocolate, and other crucial support during the rough times. Our neighbors basically adopting Matthew and taking him everywhere. Other neighbors filling in my many home maintenance skills gaps. On and on. So much kindness.
2021, you really put us through it. We’re glad we found a way to see the good where we could. An amazing trip for me to visit Alma and Adam in Massachusetts. Hikes and talks with Anya. Many meaningful phone calls with friends and family, some who have come out of the woodwork (and I’m so grateful). Far-flung and local friends and family breaking our isolation bubble by coming to visit. My parents keeping close during all the hard moments. A trip with Mark to Virginia Beach to tour the tromping grounds of his “good old days.” Michael killing it as a college senior. Ben’s good choice to take a break from the college rigmarole to spend time working on himself. Matthew earning his driver’s license and gaining independence as he gets himself to Speech and Debate and fencing practices. The hard times also were softened by amazing caregivers, doctors, nurses, physician’s assistants, physical therapists, occupational therapists, and speech therapists.
“It’s a great day to be alive!” Mark said this morning. Truly. We are fortunate, and we are thankful.
Go to sleep now, 2021, it’s time to say goodnight. We are ready for 2022.
The day of Mark’s latest MRI, we drove home from the hospital in silence. His norm. My choice for this particular drive. It was rush hour and we were both hungry, exhausted, and frustrated. A recipe for a fruitless discussion. After a day that had dragged on too long for Mark’s brain to tolerate, culminating in him yelling at a nurse and me crying in a hallway, I was utterly fried. He had had a good scan, but it had been a bad day. And if that doesn’t make sense to you, that I’m glossing over learning that at this milemarker, Mark’s cancer has not reappeared, then I have failed to adequately communicate what my life is like. To be fair, oftentimes I don’t understand my life. The math almost never works in any significant way in our favor. It’s like how science tells us the climate is changing, but given a warm day in November, we all perk up. “At least it’s a nice day!” as the planet melts and burns. Mark’s mobility and cognition are slowly trending up but also vary unexpectedly hour to hour, minute to minute, in critical ways that keep our lives structured completely around his care. Yesterday, for example, Mark suddenly started speaking nonsense sentences to me. Right before that, he had been blowing his nose super hard, and with his tissue-graft-not-skull situation, perhaps he squished his brain a bit from the pressure, I thought. I gave him an Ativan, adjusted my expectations for the day, and kept a closer eye on him.
The good scan/bad day was supposed to go like this: 11:30am MRI, 2:00pm neurosurgeon, 3:15pm ENT surgeon. These two surgeons, rather than an oncologist, continue to lead Mark’s care and would give us the critical information of the day: cancer back in session, or cancer still out. Brain stable, brain going south. Not an easy day to go into for me, for sure. Mark, on the other hand, was fine; he had no idea what the stakes were for this particular trip to the hospital. In the whirlwind of being the patient, this was just another whip around the inside of the funnel.
The MRI went fine, but it was immediately clear from the size and general temperament of the neurosurgery waiting room crowd that we were IN FOR IT. Again. The neurosurgeon operates four days a week (FOUR DAYS A WEEK. On brains. I have a lot to say about that, but I’ll leave it for another day), leaving one office day for him to see every patient under his care. That means that this office is always, always a complete nightmare. We’d never make the ENT appointment. To me, it was critical to make it to both appointments. To Mark, these appointments were just an obstacle to what he wanted: to be back home on the couch. “Let’s just leave,” he said, causing a little pit to form in my stomach. When you have your kite strings tied to highly specialized surgeons who are in charge of keeping you alive, you try to see them at the schedule they suggest. Or maybe that’s just me. I tried to distract Mark. I made conversation with other people in the waiting room. I rolled Mark up to the ENT office to see if they could squeeze him in early, which they could and did. The scan looked good: no sign of cancer, and the free flap (tissue graft) looked healthy. Whew. Then they cleaned out his sinuses — which really I should stop watching — and sent us back to the neurosurgery waiting room, which by then was almost entirely empty. It was 4pm. I was hopeful. They quickly put us into an examination room, where Mark laid down and fell asleep. Forty five minutes later, a resident came and did a quick evaluation. Then we were alone again, left in the kind eerie quiet that in a hospital setting is unsettling. It was after 5pm. “We’ve waited long enough. Let’s go,” Mark said as he climbed off the table and got back in his wheelchair. “Let me try to find someone,” I said and went to look for anyone to help us. A staff area was filled with clinicians working on computers and phones. I lurked around, waiting for an opening to engage that never came. I went back to Mark. I went out and lurked some more. I went back to Mark. Finally, he said forcefully, again, that he was leaving. “Okay,” I said, giving in, too exhausted to fight to stay any longer. As I pushed him down the hallway, Lois, the kind older nurse who has helped us many times, appeared. “Lois, we are leaving. I can’t keep him here any longer,” I said. “Stay,” she said, “The doctor wants to see him.” “I DON’T WANT TO SEE HIM,” Mark yelled. I looked at her for a long moment.”Have at it if you think you can help,” I said, taking a step back from his wheelchair. Lois, God bless her, tried making small talk. She offered Mark a snack. She did a little jig. Literally. Mark, having dipped into a dark and angry place, stayed laser focused on his goal. To leave. “The doctor will see you in a minute,” Lois told Mark. “A MINUTE?” he roared. “UNLIKELY!” She glanced at me. I was tearing up, sniffling under my mask, the stress of the day breaking through. “It will be five or ten minutes, tops” Lois responded. “Yeah RIGHT!” Mark sneered as she strode away. We waited, frozen in our hallway standoff. I was done saying any words to Mark or anyone else. Mark, who usually plays that role, was not done. “IT’S BEEN 10 MINUTES!” Mark yelled into the air three minutes later. Finally, the surgeon appeared before us. He didn’t bother taking Mark into an exam room. He talked quickly. The scan looked good, but he didn’t understand why Mark can’t walk. He looked at me. I shrugged. I LIVE WITH THAT REALITY EVERYDAY, I thought. Maybe there’s arthritis in his neck, he said. Maybe another surgery could help with that? He ordered a skull base/cervical spine MRI and said he’d call us with those results. I let this wash right on over me as I finally pushed Mark towards the exit.
Driving home from the hospital as the daylight drained from the sky, stunned by how badly the day had ended, I let the silence blanket me. It’s exhausting to manage Mark’s entire life, and it’s exhausting to manage him. It was horrifying to watch Mark yell at Lois and to feel like there was nothing I could do. He needed to stay; he didn’t want to. His brain’s best at that moment was pretty darn bad, and it showed. Lois needed him to stay (who knows the pressures on her to keep patients from bailing); she was willing to throw herself into his line of fire to make it happen. I was grateful and ashamed. I felt like I had failed.
On that long drive home, a memory popped into my head of Anya, my oldest, as a child. On the seesaw of childhood, her oversized intellect was balanced by extreme sensitivity to sounds, crowds, and expectations. She was the child who hid under a chair during circle time in preschool. Who hated fireworks and parades. For whom the softer parts of elementary school, like recess, gym, and lunch, were painful parts. She did not fit in, and she expressed that, and that did not make her life easy. I have two favorite photos of Anya from her childhood. In one, she has walked out to the middle of a Wisconsin cornfield, alone, and is standing looking pensively at the summer sky. In the other, she is standing on top of an Indiana campground picnic table under the gloam of a late fall day, solemnly looking at the woods. This is my kid. This is who she has always been, and the fierceness of my love for her aligns with the fierceness of her uniqueness.
I have a lot of specific memories of young Anya being fully herself, but a particularly poignant one is from when she was around eight years old. One of her bottom front adult teeth came in with not enough accompanying gum to keep it safely in place. Gum surgery was ordered. Her dad and I selected the cadaver gum from the limited menu of choices and dutifully filled the prescription for a mellowing pre-surgery medication to be given at home. By the time we arrived at the periodontist office, the medicine had kicked in and Anya was loopy. On the crushed velvet chairs in the waiting room, Anya sat pushing the fabric one direction, then the other. One direction made the fabric color lighter; the other, darker. She started using the colors to write, and we watched as she carefully spelled out “HELP ME” on the fabric. This was not going to go well. Given the choice of flight or fight, when the burly mobile anesthesiologist came for her, Anya chose fight. We listened from the waiting room as he tried to soothe, then explain, then negotiate. I had recently shown the kids the the original Pippi Longstocking movie from 1969, and to our horror, we heard Anya slur out a quote from the movie. “SHUT YOUR DAMN COTTONPICKIN’ MOUTH!” Followed by a salivary wind up, the guttural gathering of the only weapon this little kid had. “DON’T DO IT!” the anesthesiologist warned. “THWOOOT,” we heard as her spit sailed at her target.
I was horrified, listening to my kid flail and fight and suffer. I was also horrified listening to my kid be most likely their worst patient of the week, or month, or year. Definitely of the day.
A week or so later, I brought Anya back for a check up. I was chock full of anxiety about how Anya would behave and what the periodontist would think or say or do. He was, however, relaxed and circumspect. Clearly sensing my tension, he nodded at Anya and said to me, “Enjoy it. It goes by quickly.” While I understood his good intention, I actually felt like he was adding another thing to my parental to-do list. Keep your kid healthy and safe, make sure they behave appropriately in all settings, definitely make sure they don’t spit on doctors, and oh — enjoy the journey! Not this day, doctor. No. Too. Much. If the goal is always to see the forest for the trees, it is not always possible at every moment. And when you can’t see the forest, telling someone to see it doesn’t help them see it. Acknowledging the trees? Much better. Because Lord knows, they are RIGHT THERE.
Driving Mark home from a good scan/bad day, I gave myself the grace to recognize just that. It had been a Very Bad Day. It didn’t matter, in that moment, that Mark’s cancer has not returned. It mattered a lot that I was exhausted, that if I tried to discuss it with Mark he probably wouldn’t remember it anyway, that when we got home I’d have to make him some dinner and do all the other things I do. The trees were thick. It made sense that they were what I could see.
“None of us thought Mark would have made it this far!” the neuropsych doctor told me cheerfully last month. Clearly he thought this would be a shared forest moment. But I didn’t know this. I saw the trees. “Wait, THIS is what your office thought? All the times I asked for and did not get any prognostication, you all HAD ONE?” Tree. Mark yelling at the nurse? Tree. Anya spitting at the anesthesiologist? Tree.
Forest. Trees. Forest. Trees. A little more whiplash in the funnel. Give me a minute to find a way to fly high above and see that forest again.
On Thursday, I was sitting in my car in the high school parking lot, waiting to pick up Matthew from his Speech and Debate team practice. I had my window down, and a car pulled in next to me. “Are you Diane?” I heard a woman’s voice say. “I am!” I said brightly, turning to her. I recognized her face from Facebook, but I didn’t know her name. She introduced herself and said compassionate things about Mark’s and my situation. She mentioned that she understood my intellectualizing in my writing.
Afterwards, I thought about what she said. Intellectualizing. I do that. I know I do. I do it because it’s what my brain wants to do, and it’s also a survival mechanism. Because from time to time, when I allow myself to feel the scope of this tragedy, for Mark, for his kids, for my kids, for me, it’s like inviting the tsunami at the horizon to advance. That dark line, from allllll the way left to allllll the way right. “Ready or not,” I could say, staring it down, “Advance!” I don’t choose to say that. Because I saw that movie, and I know how it ends: chaos, swirling debris, massive trauma, and lives lost. I have to function, and that wave is too freaking big for me to handle. Instead, I carry a big rucksack. I fill it heavier and heavier, sharing it with those who are willing to take a turn, and otherwise bearing what I have to bear.
How does this feel? It feels really, really hard. It feels very, very sad. It’s very, very heavy. I’ve been doing great with my Alive Tour, previously named the “Not Dead Yet Tour.” I’ve been forcing myself to engage more, plan more, experience more. I went to the Rolling Stones concert, took Mark to the zoo, and have said yes to more social things than I have in the last two and a half years. Which may not be saying much. “I’m feeling worse, somehow, now that I’m doing more,” I told my therapist last week. She wrinkled her brow. “That sounds like grief,” she said. Oh! I didn’t realize. Like the good student I am, I recognized that I had something to grab hold of. Grief work! Work! I could do this. I ordered some books. “It’s hard to find books that are about grief but not about someone you love dying,” I said to a friend. “The grief is about YOU,” they said. “Oh, I’m the one that died?” I said. “Yes,” they said. I understood. Mark is the obvious grief. On top of that, I am grieving the loss of me.
Some days I feel that more than others. Today, capping off a not great week, was one of those days. Today, my dad had surgery to treat recently diagnosed bladder cancer. My dad, who is my rock, my source of wisdom, my coach, my companion, and my co-conspirator in many a too-long bike ride in questionable weather conditions. He’s got cancer. I am carrying that in my rucksack. A few days ago, I took a long bike ride. I didn’t feel like it. A caregiver was watching Mark, the weather was adequate, and so I did it anyway. I pushed through hard miles until I hit the point, earbuds in and my playlist blasting, to where it felt good. I pushed more, pedalling harder, music pounding, until I started to cry. I cried for a mile or two, until the tears dried up.
Today, I also read Mark’s recent neuropsychological evaluation report. I was waiting for this testing report, to give me a more objective assessment about Mark’s brain functioning. There were specifics on many metrics, none of them using any words above “average” and many of them using the word “impaired.” And then some hard hitting conclusions.
These are not surprises. I know these things, at some level. And yet reading them in print is a wallop, again. The consistency year to year means that how things are is how things can be expected to stay. Mark will never read these words, and he does not know the part that I already knew — that a recent scan is “worrisome” as the radiologist wrote. Could be something, could be nothing, and I know enough to know to control my emotions around the uncertainties. And yet it can’t not weigh me down. Getting through the days until we have more information is difficult. I haven’t told Mark; I don’t see the benefit in him knowing. I am carrying this burden for him.
“i carry your heart(i carry it in my heart)” E.E. cummings wrote. I remember plumbing that poem for its depths, as best in my complete earnestness as I could, as a young 20 year old. I understood then as much as I could, as much as anyone can before they start carrying anyone’s heart. Now I understand so much more. And I carry it. It’s a heavy, difficult, convoluted beauty and mess. Love.
Sometimes you don’t truly feel the heaviness of what you are carrying until you put it down. Driving away from Pittsburgh, into the Laurel Highlands, I was struck by a feeling of lightness. Perhaps this is how astronauts feel, I thought, driving deeper into the mountains and leaving Mark further and further behind. Having blasted through the thick edge of atmosphere to interplanetary space, friction, heat and gravity give way to silence and the simplicity of light, dark, inside, outside. Light as a feather.
Then I started crying. Deep sadness, frosted with a layer of the occasional kind of panic I remember from early parenting. The OH-MY-GOD-DID-I-LEAVE-THE-BABY-ON-THE-ROOF-OF-THE-CAR kind of panic, bred of exhaustion, responsibility, and fear of failure. I kept this up, vacillating between the wonder of freedom and the crushing weight of what I was leaving behind, periodically on the trip. But. But, but, but…
Do you know how beautiful it is out there, free of gravity? Blindingly, shockingly, stunningly, searingly beautiful. I drove an hour and a half that first day, until I reached the long gravel driveway of a friend-of-a-friend’s mountain home. The car wheels crunched past still-green trees, the asters and goldenrods betraying the season as they bent under the weight of white, purple and yellow blossoms. I found the key to the house, put the cushions out on the sunny deck, and checked my cell service. None. I laid down and fell asleep, waking an hour later to the crunch of my friend Lisa’s car rolling up the driveway.
Respite. From Latin, ‘Refuge; consideration.’
This was not a vacation, it was respite. A refuge from my personal years-long storm, a time to weave onto my rattled life a buffer of myriad blankets of things I love. I did this in a way that provides shape, texture, and warmth for who I know myself to be. When I left the mountain house, full of friendship and food, I headed directly for the ocean. Along the Connecticut coast, I ate a $33 lobster roll in an empty bar while talking to the young bartenders about their lives. I silently strolled the darkening streets of wealth during the softest hours of dusk. I watched monarchs alighting along the ocean’s edge and biked through quiet towns heavy with pumpkins and colonial blue doors. I spotted egrets hunting on the edges of honey rushes and cormorants diving into steely masses of silver fish. I drove many, many hours.
When I arrived at Alma and Adam’s doorstep in western Massachusetts, a gift of hot chai tea in hand, I was crying. “I made it,” I stuttered out. Alma laughed and opened their arms wide. I hadn’t allowed myself to believe I could be there until I actually was. For four days, we ate, hiked, explored, and talked. It had not occurred to me that I had not seen Alma’s world in three years. An eclectic, life-filled apartment exactly as I’d imagined. Their cat warm and friendly and then suddenly the fierce hunter. The short walk to the edge of the churning Connecticut River, where Alma spots bald eagles along the edge of the hydroelectric dam. Ominous black vultures spinning constantly in the sky overhead.
While I was in Connecticut, Alma had texted me. “How about this for a sentence? We can go to a bog and go to Vermont.” Alma knows me very well. This sentence was like giving me rocket fuel and telling me we were flying to the moon for a day. Thrilling. We drove winding roads amid changing trees to one of the endless unassuming trailhead signs dotting the region. The colors, the smell, the bog ecosystem with plants that I’d not seen in 30 years. Alma jumped on the boardwalk floating on a sea of crimson red sphagnum moss. The ground undulated like a waterbed. The silence permeated the air. I felt complete.
There are many other stories of the trip. Lunch and a long walk with my dear old friend from Chicago, Rebecca. The “Big E” regional fair, with fried everything, salmon-on-a-stick, ribbon-winning preserves and tatting, and the opportunity to for me to yell “Sooie!” over and over during the pig races (to Alma’s horror). Eating along the edge of the Connecticut River in Vermont, then driving into New Hampshire for a hike. Hiking the mushroom and pink lady slipper-ladened conservation area near their apartment that Alma and Adam each walk to for their own regular respites. My own solo hikes, bike rides, and moments of music and contentment while driving.
There is a lot coming up with Mark, and it’s been an eventful medical week since we’ve returned to the homefront. But I will leave that for another post. For now, I will rest in the memory of my respite. At the onset, I had titled this week away the “Not Dead Yet Caregiver Vacation.” Somewhere along the line, after the crash of emotions had hit the shore and I realized the beach of me was not fully eroded, I understood that I have been aiming too low. Like some kind of muscle-memory, it came back to me. I am alive. I remembered. I felt it. And it was sweet, and it was good.
“Someone wants to give you a gift, and they are asking me what to give you. If you could have anything that’s special and not a necessity, what would you want?” Alma asked me a few months ago. “Time,” I answered immediately. Time was the one thing I wanted, the one thing I needed, the one thing I could not readily give myself. I know me pretty well. We are on a first name basis. I know how to take care of myself. I know how to refill. Self-care, spontaneity, creativity, friendship, family, exercise, nature; I know. I just need the time to do it.
“People who haven’t walked in your shoes can’t understand,” said my mom, a cancer survivor. She knew. Lord knows, and she for sure does, I probably did not do enough when she was facing down the gauntlet of chemo rounds. At that point, I didn’t know. Nearly at the end of her rounds, she hit the wall and wanted to give up. My dad told me this. I don’t think I understood it. In my view, she had been handling the whole mess stoically. And so, you know, fine. But with some people, you have to read the edges of their words, watch the shifts of light and shadow and try to figure out what they need. My mother is one of those people. And so, I can be, too.
Except sometimes, I am not. Sometimes, I am the drowning swimmer who finds herself out beyond the surf. “She seems to be doggy-paddling. I think she’s fine,” some watchers say to each other. They turn back to their books, naps and cocktails. I begin to call out here and there. “I’m okay! I’m a little tired, but I’m okay!” Startled, they look up. “She’s okay,” they whisper, “She just said so.” Time passes. Miraculously, I’m still doggy-paddling. “Hey!” I cry out to the picnickers on the beach,”Hey!” Some keep eating. Maybe they didn’t hear me. Others carefully call out, “Are you okay?” “I think so!” I say. ‘You’ll let us know if you need something!” they say, returning to their distractions. The ones who are sensitive, the empaths, the ones who have also at some point doggy-paddled too long, the ones who are open and unafraid, the ones who understand that fears and insecurities are lifelong challenges to face, the ones who know that you never, ever leave someone who needs you alone in their terror, understand that maybe I’m not okay. Maybe I’m getting tired. They keep an eye on me. Eventually, fatigue catches up. I am deeply aware that I am not okay. I am tired, so tired. I see a gathering of lifeguards, and they are talking to each other on the beach. “Help!” I cry as loud as I can, “Help!” “We hear you!” one says. “We are calling a committee meeting to decide how to best help you!” “What?” I yell over the wind. I’m confused. Did they say to keep swimming? Are they coming? I keep swimming. Time passes. Days. Weeks. “Should I keep swimming? Can you please help me! I’m asking for help!” I gasp out. “Yes!” one yells, annoyance in their tone. “You don’t get to decide how we respond. We’ll get back to you when we have an update.”
I stay confused for a time.
Then I decide to save myself. But not alone. Never alone. I calm my mind. I paddle carefully until I find my footing. So focused on the lifeguards, I hadn’t seen them. They had been watching, listening. They had been waiting the whole time. A cadre of people reaching out to grab hold of me. They pull me in. Give me warm blankets. Feed me. Pat my head until I fall asleep. “Rest, rest,” they say encouragingly. I close my eyes. I feel light as a feather. Another swim will happen another day. “Shhhh,” they whisper.
This is my story. It is an epic story of love and loss and life , and I want it to matter. And I tell you this particular story for this reason: no matter how you are doing and what you think you have to give, someone in your life is probably out there doggy-paddling. They may or may not be calling out for help. They may or may not be calling out specifically to you. But if you see them, if you hear them, you know. Do not look away. Do not be afraid. You can help. There is always a way. You can put out your hand. You can swim out there with some food. You can skywrite them encouragement. There is ALWAYS a way.
Listen. Hear. Respond. Mr. Rogers taught us to look for the helpers. Be the help. Be the helper.
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.
Bobby died. His wife contacted me yesterday to tell me that he passed away on Saturday. “Covid, Di,” she cried. “My son and I had begged him to get vaccinated.”
It’s unbelievable that a person as substantial as Bobby is gone from this world. He was a man of character and convictions, and like all of us, a few contradictions. Bobby was Mark’s longstanding caregiver and friend, and for the time he was with us, he knew our lives more intimately than almost anyone. He cared for Mark like he was a brother. He visited Mark in the middle of the night in hospitals, held onto him as he wobbled down hallways, coached him to eat and exercise, encouraged him to strengthen his relationships with his kids. More than once, Bobby was with me when Mark almost didn’t make it. Bobby was unfailingly patient and kind to Mark. He taught me a lot about parts of life I didn’t know anything about.
“Bobby brought Mark to life,” Alma reminded me on the phone yesterday. They’re right. Bobby was the consummate storyteller, and he didn’t mind that Mark did not always add much to the conversation. He’d get on a roll and keep rolling. The Steelers, his family, crazy stories from when he used, and many, many stories of sobriety, weight-lifting, and recovery. He loved to make us laugh. After Mark’s craniectomy, he asked if Mark’s head would always look like that. Yes, I said. “Well,” he said, “I guess he can start wearing hats.” He was the definition of that old term, a “man’s man,” yet he also was more able to navigate, talk about, and nuture a man’s feelings than any other man I’ve ever met.
I’ve been thinking about how years ago, when I was raising young kids, my parents would give us an envelope at Christmas each year. Inside was an index card decorated in sparkly marker surrounding the words: “The Gift of Time.” The card would have a few ideas of what that could be, and it was both specific and open. The message was consistent every year: We will show up for you. We will help you. We will love you through the best thing we have to give: ourselves.
Bobby gave our family the gift of time in exactly that way. He gave all that he had to give. And right now, all we can wish for is that we could return that gift to Bobby, too.
Bobby’s death follows a similar story we’ve heard on the news over and over during the pandemic. He thought some of the stories he heard mongering fear about the vaccine and suspicious origins of the virus could be true. He had gotten this far in life on sheer willpower, stubbornness, and faith. He was sure that if life had not gotten him yet, Covid sure as hell couldn’t. Knowing Bobby, I can understand how he came to think this. Knowing Bobby, I wish he hadn’t.
Covid took a very good man from this world, one who was always doing his very best. RIP Bobby. We love you and miss you. I’m sure heaven is a lot more fun today with you up there.
“Dad said it wouldn’t matter if Matthew died,” Michael told me a few weeks ago. “In front of Matthew?!” I asked. “Yes,” he said.
I had been talking to Michael about damage to the frontal lobe and hard truths of life with Mark. We were discussing some not-great things Mark has said recently. To whit and per the speech therapist’s recommendation, I had been quizzing Mark about his progress with the Alex Trebek autobiography. “I was reading about contestants Alex met on Jeopardy who he felt were significant,” Mark said. “If you were writing your autobiography, what significant people would you include?” I asked. Mark named some people from work. “What about friends or family?” I tried. He couldn’t think of any. “What about any of your wives? Like me?” I joked, probing for which parts of Mark were alert in there. The one that would understand the humor? The one who could volley that one back?
“Time will tell,” he replied.
I thought that was a good response.
Mark is three months out from the big May surgery. When people ask me how he’s doing, sometimes I’ll say “stable terrible,” but mostly I say “stable.” Which is how I perceive it. But also, the above story is included in what stable looks like here. It can’t actually be described as good. Apathy is difficult to cope with, and empathy is critical to live with. Walking would be nice, too. And obviously, no measure of intelligence and maturity in the boys can fix what must break inside them when Mark fails to care about their feelings. Or in Michael’s example, even their life.
We have three more months to wait before the surgeons officially determine if the surgery worked, from a purely technical standpoint. So stable means that, too. The life or death question is unanswered. We don’t know if Mark will continue to heal, or whether things will fall apart again.
Not one to adhere to the stay-off-Google mentality, I continue my quest to understand. Mark’s brain damage is in the locale that created the famous case of Phineas Gage, whose railroad rod-through-the-head accident in the mid 19th century taught neuroscience about the heavy lifting of the frontal lobe. In Phineas’s case, it changed him from a nice, hardworking guy with whom you could happily talk, to a rough dude you’d rather avoid. The frontal lobe is “…vital to the sense of self and others … necessary for healthy interpersonal relationships and decision making …” In other words, the crux of what makes you you.
Mark’s social-emotional-cognitive self needs intervention (speech and occupational therapy, and active engagement with people and the world around him), with the first six months post-surgery the most critical for making improvements. This has been true every time he’s had a medical procedure to his head, but the frequent trips to the OR mean that we haven’t been able to settle into a place of understanding who Mark will be after all this. And to be more conservative, it could take a full year for his brain to find its landing strip, assuming the medical plane does not take off again and reset the clock. In the meantime, I try not to put too much weight on any individual thing Mark says, or how he behaves one day to the next. Here’s how it’s trending right now: Mark’s increasingly removed, living inside his head. His world, small for quite a long time now, seems even smaller. Functional goals the speech therapist and I came up with, alongside Mark, include helping the family keep on schedule and feeding/watering the dogs. Watching the clock is easy for him to do, because he is excellent at perseverating on time. “I’m going to refill the hummingbird feeder in five minutes,” I say. “Keep me honest.” He dutifully gives me updates. “Three minutes to go…two minutes…one minute…” As a bonus, when I return he tells me how long I took to complete the task (four minutes).
He keeps forgetting to feed and water the dogs. And I keep forgetting to remind him.
It’s difficult to find tasks to help Mark feel purposeful in the household. Paying the bills is out, for example. The other day, Mark told me he wants to grow his hair long. How long? “Until I might trip on it.” “How long would that take?” I asked, proving that a teacher can never resist the teachable moment. He shrugged. I persisted. “Hair grows roughly a 1/2 inch per month. You are six feet tall. How long would it take?” “A year and a half,” he said. I tried again. “So, if it grows 1/2 inch a month, it can grow 6 inches in a year. You are six feet tall.”
Mark: “A half year.”
Me: “Are you joking?”
Mark: “I don’t do math anymore.”
When I relay stories like this, inevitably some people insist he must be joking. There’s no way, in their minds, that he can’t be. And sometimes I am not sure, either. In this case, Mark was not joking. His brain was not up to the task. If I asked again the next day, maybe he would be. Maybe not. Sometimes the electrochemical pathways inside his head work, and sometimes they do not.
Mark’s perseveration is on a serious uptick. He obsessively watches the bird feeders. From his position on the couch, he leans forward and looks left to watch the hummingbird feeder out front, sits back for a moment, and then leans forward again and looks right to watch the hummingbird and thistle feeders out back. “Hummingbird,” he exclaims to the room, staring intently at the feeder. Last night at dinner, he kept tally of the day’s hummingbirds as Ben and I talked about mask mandates for college.”27,” he stated. 28…29. Ben and I periodically stopped and affirmed we were listening to his count. Mark passes huge chunks of his day observing the birds, contentedly. At least he’s not Phineas Gage, screaming obscenities at people.
Is his perseveration new-permanent? New-tranistory?
Time will tell.
Stable, adj. (Merriam-Webster): Not changing or fluctuating.
Stable, adj. (The Free Dictionary): Resistant to change of position or condition; not easily moved or disturbed.
Stable, adj. (OED): Fixed or steady; not likely to move, change or fail.
Hmm.. maybe I’m using the wrong adjective.
Predictable? Manageable? A few days ago, I thought Mark’s forehead looked kind of swollen. I grabbed my phone to document it, in case I need a photo for comparison down the road. Did it hurt, I asked. Mark touched his forehead. “How does it feel?” I asked. “Deformed,” he said. I gently felt the mound of quad muscle under his skin, tracing to where it dips down into his temple. Mark ramped up. “I’M NOT GOING TO THE ER! I AM NOT GOING TO THE ER TONIGHT!” I took it as a sign that he might need to go to the ER. I scrolled through my phone looking for a recent photo for comparison. He’s had his head wrapped for long enough that I couldn’t find a clear, straight shot of his forehead. I looked at the photo I had just taken again. Past the mask of belligerence, I thought his skin looked nice and healthy. I decided we could watch and wait. “It’s okay, Mark, I’m not taking you to the ER,” I repeated, until he finally accepted my words as truth.
I like Mark’s wheelchair. I like Mark in the wheelchair. It’s like when your 10 month old baby starts walking and you look at that vulnerable, lurching body with its big soft head and think, well that’s a dumb design. And then you rush to baby-proof the house because what’s in that head is not ready to control that squishy baby body. Mark is safer in the wheelchair. But of course we continue to work towards his return to the walking living. With physical therapy, his quad-that’s-now-a-tricep is getting stronger, but he is still not able to walk safely, unassisted.
And actually, he had been making progress until it all went in a the wrong direction on Wednesday. After a mid-day nap, he swung his legs over the edge of the bed, stood up on top of his shoes, and with a yell fell right over.
As usual, I was right there but couldn’t move fast enough to stop it.
The next morning, Mark couldn’t put any weight on that foot — the foot of his already compromised leg. If the knee being unsafe on a good day is Strike One for safety, the foot injury is Strike Two. He tried to fit his prosthetic that protects his knee from buckling over his ankle, and it won’t fit. Strike Three. Confined to the wheelchair it is, for now.
Mark scooted down the front steps. I loaded the wheelchair into the car, and we headed for speech therapy. After speech, he put up a respectable fight about going to Med Express for an X-ray, but finally caved when I told him the PT wanted it checked for a break. Which I made up, but seemed like something that could transpire. Fortunately, it is just a bad sprain.
Yesterday while the caregiver watched Mark, I pounded my energy into the park on a seven mile hike. As usual, I carried as little as possible. No water, no snack. No field guides or binoculars, even though I spend most of my hikes trying to identify plants and spot birds. The plants stretched toward the sky, and I looked up into the faces of green-headed coneflowers. Stinging nettles bit at my shins while the Sweet William brushed my shoulders. Shiny turtles slide silently into the creek at my passing, and a great egret hunted next to mallards in the wetlands. I picked up a lime-green walnut from the trail, rubbed it in my palm, and took in its citrusy scent. The smell takes me back to my childhood, to the walnut tree in front of the white barn anchoring the apartment complex near my house, my friend Dorothy and I playing in our childhood. A sweetness and sadness reached like late-day sunbeams straight into my heart, right into my belly. There was a twist and a flip. I slipped the walnut into my pocket to accompany me on my journey.
“It seems like all of life is about coping and carrying,” I said to Alma when they were home with Adam last week. We were talking about forks in the road, the choices that we make that carve a new path. Some of them may cause pain in the future, and hopefully we have the skills to cope and the strength to carry that pain. Life chisels away at us, and we work to find the beauty within what remains.
When I got home, I took the walnut out of my pocket and placed it on the kitchen windowsill. I said goodbye to the caregiver, and I asked Ben to watch his dad for five minutes so I could take a shower. Mark was looking out the window at the birds. He would surely be no trouble.
“It seems like it’s been quieter for the past few weeks,” my friend Sam said over lunch last week. It’s actually been very loud, at least in my head. It’s a lot to sort out, to create a narrative. So bear with me while I download 10,000 thoughts in one post, without much aplomb.
“It’s amazing how much of medicine takes the scorched earth policy,” I said to Mark a week ago. “Radiation, chemo, antibiotics…” “True,” he replied. Mark has started on a scorched-earth antibiotic regime. Lab work answered the burning question of why he has chronic diarrhea. C. diff, or Clostridioides difficile, is a bacteria that loves to live in your gut while you would love for it not to live there. While our bodies are home to a complex, robust and friendly microbiome working in partnership with our cells to keeps us alive and functioning, C. diff is an unwelcomed foe. It’s simply trying to survive and reproduce, like all living things, except in this case its effort to extract resources includes producing toxins that kill cells in your intestinal lining.
It’s an ugly story, people. C. diff is a fecal spreader that loves hospital and nursing home environments (there’s a reason your doctors mechanically wash their hands before touching you), meaning Mark must have picked it up in the hospital from a poor handwasher. C. diff, that clever little bugger, is resistant to hand-sanitizer so soap and water is the key. Mark, being cognitively not at his best, isn’t in a great position to remember that anything he touches, if he’s not washed his hands like a surgeon getting ready to operate, could leave some C. diff on surfaces. It’s a little like managing a household pandemic. The hand towels in the kitchen and bathroom are gone, replaced with paper towels. I’m cleaning the surfaces Mark touches with a bleach solution throughout the day. The boys have been warned in graphic detail about how C. diff spreads, and what they can enjoy experiencing if they don’t take it seriously.
You know how I like to find the good news in things, because it keeps me from curling up in the fetal position and giving up? For this one, it actually wasn’t difficult. While C. diff can be deadly, I’m not too worried about that, because Mark’s had chronic diarrhea since April. The chronic diarrhea is surely a contributor to Mark maintaining at a svelte 131 lbs. So while this diagnosis is not awesome (C. diff has a reputation for a reason), if Mark can clear this infection then it could lead to him gaining back more strength.
Now eight weeks post-surgery, the incisions and drain sites on Mark’s head have mostly healed. He’s been worrying it for weeks. “Mark, LET IT GO…LET IT GO….” I tried singing, as gentle reminders and pleas have had no effect on him. “Stop singing that,” he said. Okay. The spot on his forehead that had opened up prior to surgery was red and scabbed again last week, after having healed nicely for a few days. “What happened?” I asked. “I tried to pop it, because one of the doctors said it was a pimple and that’s what I should do.” Yoi.
Mark has repeatedly fussed at the neck incision. “Am I waiting for this to open up, or close up?” Mark asked me one morning. I try to get inside his mind to figure out this train of thought. “It’s scar tissue you are feeling,” I said. “Something’s in there and it’s supposed to come out,” he countered. “No, nothing’s in there that needs to come out,” I tried to explain. I told him, again, that his thigh muscle was used to repair his head, and that they connected it to veins in his neck. “MY THIGH IS IN MY NECK?” he said, alarmed. “Um, yes?” I said. “I wish you hadn’t told me that!” he exclaimed. “I didn’t think you didn’t know?” I said, thinking, YOU’VE BEEN TOLD THIS 40 TIMES. Oh well. Michael reported that he was picking at his neck again today. “Dad said picking at it will help it heal,” Michael said, with a half bewildered, have bemused expression.
On Monday, I had a caregiver for Mark and was determined to do my darndest to take care of me. I wanted to go to a beach, and the closest one is a state park about 50 minutes away. I donned my suit, took a book and some water, listened to affirming music on the drive, and spent a lovely hour and a half reading and people-watching. After I got home and said goodbye to the caregiver, I sat down on Mark’s right side. And immediately saw a bloody gouge at his right temple, where the skin graft was placed. “Mark, what happened?!” I was afraid he’d picked off the skin graft, the wound was so horrendous. I searched the trash cans. Bloody tissues, scabs, hair — no skin graft. I called the nurse. Mark started talking gibberish into the air. “Mark, are you okay!?” He looked at my blankly and kept saying random words. The nurse came over. The graft was still there, it was likely infected, she called the surgeon.
Mark’s head is now wrapped like he’s a wounded soldier from the Civil War. He’s on another antibiotic. I clean and rewrap his head twice a day. The word salad moment — I don’t know what that was. A seizure? It passed. I can’t do anything other than let it go.
I lay on the couch for most of Tuesday and Wednesday in a post-Mark-bad-behavior stupor. I rewatched the Nest feed from Monday. I was gone from 1-5 pm, and Mark started his head destruction project within the first hour. He was reading while he absent-mindedly picked. Sometimes he was lying down, so his slight hand movements were not visible to the caregiver sitting at the dining room table. A few times the boys walked through and talked to Mark, from his right side. The Nest feed showed Mark tossing pieces of his head over the railing behind the couch. He picks at his healing scalp wounds often (incisions and drain sites). This is the first time he’s really done significant damage, other than the occasional picking off a scab before it’s ready. The caregiver and boys didn’t noticed that he was making substantial destructive progress. I don’t blame them, although I do wish they’d have noticed. It is what it is. He’s hard to take care of. He does surprising things. He’s a danger to himself.
Next on the medical docket, in addition to the usual spate of post-surgery therapies and follow-up appointments, Mark’s epileptologist has decided that Mark has “intractable epilepsy,” which simply means that despite the significant drug load being used to fight his brain’s propensity for seizing, it’s doing it anyway. Two medications + breakthrough seizures = intractable epilepsy. “Every seizure is a danger, not only for falls and damage to your brain, but they can even stop your heart,” she said helpfully during Mark’s recent telemedicine appointment. “I’d like to bring Mark in for a three to seven day inpatient stay. We’ll reduce his medications while he’s under strict supervision, and then track his brain as it seizes. Then our epilepsy team will review the data and make recommendations. We’ll take it one step at a time. There could be functional MRIs and PET scans. There’s a chance we may want to do a surgery to remove the part of the brain that is causing the seizures. It’s not dangerous, because that part of the brain isn’t working, anyway.”
I quickly captured and stored her statements, locking them away in one of my many brain compartments. The only thing I kept out was that I know I am waiting for a phone call to plan the inpatient stay.
One thing at a time.
“How did it go,” I asked Matthew over the weekend, after he had watched his dad for an hour so I could run errands. “Pretty good, except he was kinda rude,” he said evenly. “Rude! What happened?” I asked. “He wanted to go outside to cut kindling, and when I tried to help him he kept telling me I was doing it wrong. He told me I was doing a terrible job and was no help. When I did something he thought was right, and he said, ‘Well you’ve finally been SOME help.” I know what this activity was about. Mark’s been perseverating over the dried flower arrangements over the past year. Occasionally he takes one, carefully wraps it in newspaper, and puts it in a big blue Ikea bag that sits on our living room floor for this purpose. He calls this kindling. Why he wanted to chop it up smaller is beyond me.
I took a long look at Matthew, a golden child who is unfailingly kind, courteous, and thoughtful. No emotion, no expression. Learned from the best. “It’s not personal. Don’t take it personally,” I said. “I’m not,” he said.
I asked Mark about what happened. “He wouldn’t listen! He didn’t do anything I asked! He didn’t do anything right!” Mark complained. “Well, perhaps because this was a new task, he didn’t understand what to do. Next time, he can do better,” I tried. “That’s not it,” Mark said. “He wasn’t being obedient. None of the boys are being obedient!” This was new, Mark using the word “obedient.” Mark, as a person, has never been what I’d call “obedient.” He’s more of a strict individualist who believes everyone has the right to be whatever they want, within the boundaries of kindness and common courtesy. This was not Old Mark talking, this was New Mark. The black-and-white thinking is brain injury talking. I tread very carefully, trying to understand and navigate Mark’s logic and emotions while achieving an outcome that would ultimately be helpful to the boys. “As kids get older, I think it’s natural for them to become less obedient. As they stretch their wings, it means they have to do their own thinking and deciding what’s right.” I was making things up and seeing if I got anywhere. “I don’t like it,” he said.
I know the boys have learned not to trust Mark’s words, not to put too much meaning on them, not to follow his direction, not to listen to any fatherly wisdom he tries to impart. Matthew, after his first week of being a summer camp counselor, was telling Michael, Mark and me about a particularly nebby 1st grader who’d gotten into several fights. Mark held up a fist and said, “Give the kid a racetrack.” The boys and I cracked up at Mark’s completely sincere and terrible advice. Sometimes the safety valve of laughter is all we have when the great loss of Old Mark being subsumed by New Mark is so vividly clear.
“How are you experiencing your dad now, compared to what he was like before all this?” I had asked Michael a few days earlier. “He’s really different,” Michael said. “Sometimes I get glimpses of what he was like, but mostly he seems like a grumpy old man.” We talked about how strange it is that we can lose track of what someone was like before, when things change so much. “I remember that your dad used to walk around the house singing all the time,” I said “Yeah, I remember that too,” Michael said. “I used to find it kind of annoying,” I said. Michael laughed. “Now, I miss it.”
Mark’s Mood Management
Needing to have Mark not cause caregivers to bolt and the children to be traumatized any more than they must be, I decided to try giving Mark CBD. The early-dementia caregiver community feels it can be beneficial as a mood-stabilizer. When my organically-grown, Pennsylvania-local CBD products arrived in jelly and tincture forms, I followed the directions and let a jelly dissolve in my mouth. It tasted subtly of earth and hemp rolled in sugar; not great, not bad. I gave Mark daily sublingual tincture each day for a week. His moods seemed to fluctuate independent of this little CBD experiment. I’m not giving up on it; perhaps it does a little something, so I still give it to Mark on caregiver days. And it was a worthy experiment if for nothing other than this: Mark’s oldest kid, Michael, who is the most risk-averse guy I have ever known, stumbled upon the jellies and, thinking they were candy, ate one. “What are these candies? They taste a little strange,” he asked. I snorted, delighted. “You just had your first CBD!” Michael, whose actual plan is to never have a single drink of alcohol in his entire life, looked alarmed. And later reported no effect on him, either.
Public Sphere Management
Mark is not unaware that his head looks a little squished. He’s not one to talk about it, but I know he sees it, feels it, and thinks about it. He does not always understand it. Sometimes he thinks he’s waiting for plastic surgery to fix it up. He’s not — the doctors and I are in agreement that nothing other than functional surgeries make sense in Mark’s situation. When I take Mark to the hospital for appointments, people stare. A lot of people stare. This started back when he looked like the guy-you-don’t-want-to-be during his radiation and chemo. He aged about 30 years in the course of three months, and by the time he was finishing the treatment, he looked more dead than alive. I watched people sneak glances as he slowly pulled his IV pole across the waiting room, as he was wheeled from chemo to examination rooms. It was a curious thing. I’d never been in a situation where I had to navigate staring, even if the object of the staring was by association. The farther away from chemo and radiation Mark got, the healthier he looked. And then the sawing away at his head began, and now no one could look at him and think he’s a normal dude.
“What’s it like to be in the neurosurgery waiting room?” Kim once asked. Every person there, patient and caregiver, is in a bad way, and probably 100% of the people in that waiting room are some combination of terrified, hopeful, and hopeless. “Mark’s the one everyone stares at,” I said. Which is true. The guy no one wants to be. The person they norm themselves against, sitting their with their brain tumors and aneurysms and stroke histories, looking at his mashed up skull probably thinking, well crap, I hope that’s not ever me. Or, at least I’m not that guy.
On the way home from the hospital last week, we did our usual aim-for-the-highest-calories-possible trip through the Chick-Fil-A drive-through. In an impressive pandemic pivot, the entire way this drive-through works is optimized for efficiency. A bevy of black-and-red clad teenagers with iPads come to the passenger-side car windows, walk alongside as they urge you to keep inching forward, take your order and process your credit card. A young woman came to Mark’s window. Normally, I yell our order and hand my credit card across Mark, who sits silently. This time, I tried engaging him. “Can I take your order?” she said. “Mark, do you want to tell her your order?” I said loudly. She looked at me, looked at Mark, and her face softened and changed. She got a little friendlier, and she talked a little slower. Mark left a few things out that I knew he wanted. “Do you want lettuce and tomato on your sandwich, too?” I prompted. “I’ll have lettuce and tomato,” he told her. “Do you want to make that into a meal?” she said. “No,” he said. “Yes,” I corrected. “Do you want to give her your credit card?” I asked Mark. He gave her his credit card.
I realized quickly, during the little colorful overalls stage I’ve been in, that the bolder I go, the less Mark gets stared at. We also get showered with positive interactions from strangers, and who doesn’t want that? When you’re in the medical dumps like we are, you’d be surprised by how nice it is to have the valet, the Pitt university student, the stranger on the escalor, the barista, the cafeteria worker, shout out a “love those overalls!” and “you’re working it out!” and “where did you get those?!” Our lives are pretty cleanly stripped of fun, and so a trip to the hospital needs to be maximized. Pulling into valet, I get Mark into a wheelchair,and we parade through like The Odd Couple, me in clothes screaming loudly that life is joyous and good, and Mark riding silently along with a look that reminds everyone that life is difficult and we are right live it on the edge, all the time.
Mark’s in a wheelchair 100% of the time at home. Well, 98% of the time. Occasionally he forgets and gets up to walk. We now own four Nest cameras. There’s the one outside the front door that famously captured Mark returning to the house after escaping from his skilled nursing facility 18 months ago. There’s one in our bedroom, so Mark can lie down without being constantly shadowed by me. There’s one in the kitchen, so when Mark wheels himself in there I can make sure he’s not up to no good. And there’s one in the living room, where Mark spends the majority of his days, sitting or lying on the couch, doing pretty much nothing.
Two weeks ago, with a caregiver onboard for four hours, I took a long hike and then went to the Little Eagle, bought a sandwich, and sat down to do some work. On a whim, I decided to check the Nest feed on my cellphone. I saw Mark’s wheelchair in the living room, but no Mark. I called the caregiver. “Where’s Mark?” I asked. Oh, he must be in the bathroom, she said. “He’s not supposed to be walking, at all, without someone right next to him,” I said. While he can walk, he cannot walk safely. He cannot control his knee yet, leaving him at a high risk for falling, which is why his choices are the wheelchair or supervised with the walker.”He’s been wheeling himself in and out of the bathroom over and over again today,” she said. “He must have just gotten up… Mark? Mark?” I listened to her go throughout the house, her voice inching up in volume and stress. “I don’t know where he could have gotten to!” she cried, alarmed. “There’s only so many places,” I said. “Oh! Oh!” she exclaimed. “He’s out in the street!” I said I was coming home immediately and hung up the phone. The Little Eagle is less than two miles down the road, and when I pulled onto the street, there was Mark walking along, with Michael and the puppy on one side and the caregiver on the other. Mark was yelling at the caregiver,”It’s not about you!” as she fretted alongside him. When we got back to the house, Mark laid down on the couch. “Oh Diane,” the caregiver cried, “this has never happened to me before! I’ve never lost someone!” It’s okay, I told her over and over, Mark’s really hard to watch. “You can fire me if you want,” she said. I gave her a hug instead.
“Do you ever get bored?” I ask Mark. “Yes,” he says. “Do you mind being bored?” No, he says. The speech therapist tries to help Mark think of things he can do while he’s sitting.”The body just hits the point where it wants to bolt,” the speech therapist said a few days later, reflecting on Mark’s sudden decision to GET OUT OF THE HOUSE NOW and trying to figure out how to keep him occupied. “How about playing cards with the boys? Would you play games on an iPad? Maybe sudoku?” Mark says maybe to some, no to others, and overall it doesn’t matter. The part of Mark’s brain that is damaged is the part that controls initiative, impulse, spontaneity, and perseveration. Mark doesn’t take initiative much anymore. Conversationally or behaviorally. The problem, if the speech therapist’s theory is correct, is that some part of him will periodically snap into MUST DO SOMETHING NOW mode, which is a dangerous place for Mark’s mind and body to go to. I try to combat this by designing things to look forward to and do everyday. Each morning, I make Mark breakfast, prepare his pills, and sit with him as we write up the day’s events on a whiteboard. Mark puts the date, which he reads off a daily calendar I keep on the table. There’s places for him to check off that he’s taken his pills throughout the day, done his sinus rinses (which he almost never does), completed his exercises. I write down what time we will eat our meals, and in between those benchmarks, I add his OT, speech, PT, telemedicine, and hospital appointments. If that doesn’t seem like enough activity, and if he has capacity for more, I’ll help him plan something. On Sunday, we drove to the lake and watched people fish, and later on we watched one episode of “Lost.” Today, we went to Aldi. He pushed his walker around slowly while I rushed to get everything we needed. That’s enough for him for a day, and then he’s back to the couch.
I posted watch-out-for-my-husband alert on the community moms’ Facebook page. “He’s the guy who doesn’t look like he should be walking alone,” I said. One of my neighbors responded that since she lives up the hill, she didn’t think he’d make it up there. “Well if he does, turn him around and head him back down,” I said.
Old Mark drank a couple beers for pleasure. New Mark drinks white wine. He can’t reliably judge a number of important factors around this activity. Time, for example. “Hey Mark,” I’ll say, looking over at him sitting on the couch sipping, a glass of wine at 9:00am, “Do you know what time it is?” Or, “Hey Mark, that’s kind of a big pour,” when he’s filled an entire water glass with wine. I’ve developed several key strategies for trying to keep him safe as well as happy. I bought wine glasses with demarcations of 4oz, 6oz, and 8oz. That helps, sometimes. When I buy a box of wine, which is what Mark always requests, I take out the bag, decant half, and then hold the valve open under the faucet and fill it back up with water. I decant the wine into empty wine bottles and then top them off with water. Luckily, Mark’s senses of sight and taste are such that he hasn’t noticed.
The system is working against us. I think it works against almost all of us. Not in equal ways — in wildly different ways dependent on demographics — but looking at our particular situation, I am confronted by this: we work our whole lives to get by, get through, earn the money we need to take care of ourselves and our loved ones. And then in the end, the system works as hard as it can to take it all back. Mark and I are privileged within American systems, and Mark has never taken one financially irresponsible action in his entire life. And so the fact that I am feeling the pressure and fear of “can we make it” financially tells me alot about how screwed most Americans are at surviving life and, ironically, end-of-life care.
Mark has a pension, an unbelievable good fortune and a relic of a time gone by. He also has good health insurance, and without that, I am 100% confident that Mark would be dead. I’ve never added up the cost of Mark’s medical care, but I did recently get an explanation of benefits for his surgery in August 2020 (and there’s been two additional just as gigantic surgeries, if not more so, in 2021), and the surgery and inpatient costs exceeded $200,000. Now that Mark has retired and I am taking a sabbatical, our income is cut in half. I am NOT COMPLAINING; we were solidly middle class before, and we are simply less solidly middle class now. Our bills are higher, because while Mark has good healthcare, it’s not free of course. Premiums and deductibles and copays and prescriptions. Some of Mark’s medical equipment is paid for, and then there’s lots of little odds and ends that aren’t. Want to come try out the new neuromuscular electric stim unit I bought to help exercise Mark’s quad? I have that. Need an extra cervical neck brace? I have a spare.
Also, I need caregiving breaks. On one of the early Alzheimer’s forums, someone recently posted the question: What do people not understand about caregiving that you wish they would? I commented, “The when someone tells you they have to care for their loved one 24/7, they mean that literally.” I currently have 12 hours of caregivers watching Mark each week. That leaves 156 hours each week for the boys and I to watch Mark, because he has to be watched 24/7 and the average cost of caregiving in our market is $25/hr.
Having been on disability for two years, Mark will go on Medicare soon. That will cost more, as I maintain insurance for myself and the boys, and we pay the Medicare premiums. And Mark will need supplemental insurance to cover coverage gaps for his medical needs.
In trying to make sure I’m making optimal financial decisions, I’ve met with two elder law attorneys and a social worker. Mark has a 401K and I was wondering whether cashing out early would be at all worth considering. The answer is no. He’d take a 40-50% tax hit on the money. And once that money is all spent, Mark can never qualify for Medicaid anyway. In the state of Pennsylvania, your assets cannot exceed — and I am not joking — about $8000 for you to qualify. That means spending down your complete retirement. Additionally, your income cannot exceed $2400 monthly, and between Mark’s social security and pension, it does. This is relevant because it eliminates skilled nursing from our options, because without Medicaid to cover it, it would cost out-of-pocket $10-12K a month, which is an impossibility. Assisted living, at $7-9K a month, would only be possible if I cashed out Mark’s 401K at that massive tax hit. “Am I getting this right?” I asked the social worker. “Yes,” he said, lowering his voice. “It’s a terrible system. I think there will be a lot more assisted suicide in the future.”
Diane Mood Management
“It didn’t really phase me to hear that Mark has C. diff,” I said to Hilary. “It could have been a rabbit-hole situation of trying to figure out why he has chronic diarrhea. At least it was figured out quickly.” “Too blessed to be depressed!” Hilary laughed back. For sure. That silver-lining thing is really often there. Sometimes it’s lurking and harder to find, but it’s almost always there.
And yet. Climbing out of the mental hole I descended into with this last surgery of Mark’s is serious work. It’s taking effort and intentionality, and I’m doing better some days than others. Some days, I can see the joy in the little things again. The black and turquoise damselflies darting in front of me on the hiking path. The black raspberries ripening. The days Mark goes to sleep at 5:30pm, leaving me with an entire night to myself. The friends and family that have gone out of their way to visit. I can sometimes find the humor in things, like yesterday’s UPS delivery of the “Wound Welcome Kit” from the home healthcare company. Maybe at birth we should all get Wound Welcome Kits, I thought. There’s a temporal joy I can periodically feel come across me, like the gentlest of breezes on your skin. For fleeting moments, some days, I think, this is not a bad life.
Then there are the other days. The days that Mark is more out of it and I don’t know why. The days when hearing someone talk about going to a movie, or taking a vacation, or having a cookout with friends, feels like a crushingly sad mirror held up to my life. I try to remember to breathe. I try to get lost in watching the birds at the feeder, or Downton Abbey on Netflix.
I was talking to friends the other day about our kids. The world is complicated; can our kids be hopeful? “Well,” I said, “I want them to be hopeful if being hopeful is appropriate.” This is a good summary of why my life is very confusing and difficult right now. Mark’s head gouging event was very disturbing and alarming. I could not believe the damage he did to himself. This felt different than him deciding, unwisely, to take a walk. What am I hoping for? Is it appropriate to hope for anything?
I have found myself trying to find a settling-in place to orient to Mark. The friend, girlfriend, wife, caregiver, nurse. With the chaos of his illness, perhaps what I have to do is NOT find a settling-in place, but maintain fluid movement through the continuum. Perhaps I have to let go a tiny bit more of that sense of control that most of us have, that allows us to get to the next day, and the next, and the next, without utter terror of our mortality.
I continue to try to figure out the best way to help Mark. Mark the person, not Mark the patient. A few stories I’ve heard from friends and family recently rattle around in my mind. The 80 year old uncle who despite his multiple strokes, inability to walk, and constant diet of whiskey and cigarettes, still lives independently. The story about the 92 year old grandma who insists on living in her house, despite the occasional fall down the steps. Are there better ways for people like this to live? Are there safer ways? Well of course. But that’s not how these people are choosing to live. It’s their choice, and they choose this. Mark’s choice is to try to live while often working against it. Does it matter that his brain-choices are not always in cahoots with his lets-keep-living plan? I have thought that it has mattered. That I need to stick with the rational side of Mark’s brain. Now, I’m not so sure. Maybe my job is more safety net and less savior. Maybe it’s to say, okay, I’ll help you do that; I’ll not encourage that; I’ll clean up after that mistake. Maybe I have to have the strong shoulders and accept his risk that I’d not choose. Maybe that means the boys will have many more difficult experiences that they have to process, like Matthew hearing his dad be uncharacteristically cruel to him. Maybe that means one of us will find Mark, again, fallen and in need of rescue.
We work so very hard in our lives to control what we can. I had thought I’d made some good strides in letting much of that go. Maybe there’s more work to be done.
Yesterday we finally had some rain. Mark agreed to lay in bed with me. He curled up next to me. I felt overwhelmed and quiet tears came quickly. He patted my head, stroked my shoulder. Finally, he said quietly, “Are you sad because of the storm?” I’m okay, I said. It’s okay. I held his hand, and we fell asleep.