New York, New York, United States
|On the Waves of Love. Edvard Munch, printed by|
Otto Felsing. 1896. The Art Institute of Chicago.
At night I lie awake on the living room sofa staring at the moon, envying its constancy. Change had eaten up our lives.
My husband, Marty, and I met in 1986 when he was forty-nine and I was thirty-five. Should I have been concerned by a shaky left hand? An “essential benign tremor,” as they called it back then, was not enough to derail this first time blind date. We married a year later, not withstanding my mother’s plea: “You’ll have to take care of him for the rest of your life!”
Over the years, when it became clear he had Parkinson’s, he channeled skills once used to build model ships into tinkering around the house; hiking trips became walks in the park; early retirement as a stockbroker opened doors as a guest lecturer.
He was also not above taking advantage of his disability. When our flight to New York from Denver was delayed by a snowstorm he exaggerated his symptoms, prompting a hysterical attendant to reroute our trip in a matter of minutes. An Oscar winning performance.
Most of the time Marty could navigate Manhattan on his own, depending on strangers to aid him if he froze or walked unsteadily. One helped him into a cab, another with his pillbox that he occasionally dropped. Eventually we had to hire an aide to accompany him when I was at work, shopping, or attending to life’s other necessities. Not easy for an ex-Navy man or for anyone who has to relinquish their independence.
What began as a tremor erupted into an earthquake. Sitting up, eating, and just getting from point A to B became a daily chore. Parkinson’s is the type of disease that creeps up on you like an unwelcome guest. At first the symptoms are bearable, then irritating, and finally intolerable. At least with a guest you can ban them from future dinners; Parkinson’s moves in.
Several years ago Marty’s doctors recommended deep brain stimulation (DBS). Electrodes are implanted in the brain, then connected to a battery pack embedded in the chest. The goal is to lesson dystonia, the movements associated with Parkinson’s. At the time Marty said, “No one is f…… around with my brain.” But a hospital visit related to a fall in 2015 changed his mind and on February 2, 2016 he underwent surgery. Beforehand he endured numerous tests, including a three-hour psychological exam which he aced.
If the goal were to diminish his erratic movements, then the surgery succeeded. Watching the New York Yankees play or eating a burger and fries became a pleasure, not an obstacle. And yet, I began to see a change in his cognition. His sense of time seemed sucked into an orbit of its own. Day was night; night was day. He wanted to shave at 2 am and eat breakfast at 4 pm. When he could not draw a proper clock the doctors said not to worry; things will get better. But they they got worse instead. He wanted to pack his bag for a weekend trip to a country house we had already sold. He would shred bills, misplace or throw away credit cards, obsess about appointments days before going.
His orthostatic blood pressure (if he stood up too quickly or became agitated his blood pressure would drop, causing him to black out), a minor issue before surgery, became a daily occurrence. Without realizing he had fainted Marty became even more insistent on getting up as he pleased. “I just want to get my sneakers, a Coke, the mail, a cookie.” For years he jokingly called me “sergeant” for micromanaging his life. “Don’t walk too fast, don’t forget your pills, don’t swing your cane. Be careful.” Now those concerns became strident commands that forbade him from using the bathroom (he could no longer use the shower or commode without falling) or leave his wheelchair without assistance. My biggest fear was that he saw me as a bully, robbing him of his dignity.
I spent every free hour contacting his team of doctors. Second and third opinions did not help. It was a labyrinth with no exit. “It’s the progression or it’s the last stage of the disease” became the go-to answer. Second-guessing myself became routine. Should we have heeded Marty’s original reaction and left things alone? Should we have stood fast against all his doctors who recommended the procedure? I felt powerless against a tsunami of consequence. Risk is inherent in everything you do.
Another hospital visit in October, a misdiagnosed stroke, proved catastrophic in terms of his mobility and state of mind. Just being in the hospital seemed to pull him into an unreachable void. At home he was confined to a hospital bed. Marty could not dress himself, take care of his personal needs, walk, talk, or think clearly.
I poured over his end-of-life documents to find guidance but found none. Even though it clearly stated that he did not want to be kept alive artificially, it did not address this gray area we were entering. What if eating, drinking, and taking pills only prolonged his present state? Visions of Amour, a film in which a husband ends his wife’s suffering with a pillow haunted me. His doctor shockingly suggested I stop all forms of sustenance. “Marty would want that,” he said. Merciful maybe, but willful acts I could not commit.
There was no plug to pull, so we were forced on a journey neither of us had anticipated.
Having twenty-four-hour care did not mitigate the emotional or physical strain. Our apartment, once a refuge from the hurly-burly din of the city, became a war zone. The privacy and intimacy we had cherished was usurped by a revolving cadre of caregivers, doctors, nurses, and therapists. Marty endured painful exercises and struggled to sing “Happy Birthday” to strengthen his articulation. I marveled at his sheer will, to not be cowed by the inevitable.
Each day brought a new crisis. Caregivers quit or had to be fired. Many could not stay off their cellphones, stole, or more importantly, could not control Marty’s behavior. He would constantly try to jump out of bed, believing he was still in the hospital. We had to wrap the railings with pillows, blankets, and sheets so he would not hurt himself. I would make his favorite linguine and clams knowing he would barely touch it.
Family and friends questioned the wisdom of keeping Marty at home. I loved him more than my own flesh and wanted him with me, but if I were 100% truthful my decision was also motivated by an odd sense of self-preservation. Each time Marty was admitted I ran the gauntlet from home, work, hospital, rehab, grabbing energy bars, attending to the minutiae of home life and seeing that staff took proper care of him. I thought I could better manage our lives at home but unknowingly traded one stress for another. Even at this stage he tolerated my impatience and emotional outbursts, and continued to make funny faces to lighten the mood. I broke down routinely in the bathroom.
Doctors suggested I take anti-anxiety medication but an unfortunate college experience left me with an aversion to mind altering drugs; instead, comfort seemed to spring from the city streets. On the subway a young man caught me staring at his newly sculpted haircut, so I quickly lowered my gaze. When I peeked back he waved me over. Without thinking I pushed my way through a thicket of winter coats and backpacks. He offered me his seat, which I would have politely refused but it had been a particularly difficult morning. As he sat alongside me at the next stop I said he reminded me of one of my students.
“How are you doing?” he asked. As my face became a sea of mascara he took me in his arms and whispered, “Everything will be okay; I promise you.” Before I could thank him he was gone. An unexpected “Hey lady, you dropped your wallet,” a free cup of coffee, or help with my book bag got me through the day. Eventually we found four devoted caregivers. Then hospice.
Nothing prepares you for the long wait. Nothing.
As much as I loved and cared for Marty, I could not save him. In the end he took control, relieving me of what I could not do. Three days after refusing water, food, and medication, he unceremoniously pulled the plug himself.
I had wanted him to die in my arms but he instead squeezed the hand of his caregiver, a young single mom, as I lay resting on the sofa. “I no longer fear death,” she said. “It is a gift.”
DARCY H. STERNBERG teaches Public Speaking and Theatre at the Borough of Manhattan Coummunity College (City University of New York). Her first person essays have appeared in The New York Times, The Plain Dealer Sunday Magazine, The Litchfield County Times and Caregiver.com. Hearts Afire, her play about her students, premiered at The New York International Fringe Festival and Bubbleheads premiered at the Theatre For The New City. An essay about her husband was adapted by the Jewish Woman’s Theatre.