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That Time of Year

Tom at home, Nov. 19. 2023

In November 2023, I brought Tom home from the 6th floor dementia ward at 305 West End Avenue Assisted Living. For years, I had coped with my husband’s growing dementia at home—until that November night two years before, when he pushed his scarlet Nitro Rollator down the middle of Columbus Avenue, lit up in the headlights of oncoming cars. (“I’m going to Mexico,” he declared, “And don’t you try to stop me!”) When I agonized about the staggering cost of care at 305, the memory doc tried to reassure me: “In two years, he’ll either be dead or a zombie and you can bring him home.” I had clung to this prediction with both guilt and dread. Guilt for even thinking to consider money in Tom’s care. Dread, because how would I live without a man I adored and who had defined my life for decades?

Tom had been a lifelong jogger. Until a bout of Covid led to pneumonia in June 2023, he remained active. I regularly took him for short walks pushing his Nitro to the neighborhood Viand Café or Pain Quotidien or to Riverside Park. He joined enthusiastically in the daily activities at 305, including exercises, word games, singing and especially dancing. He’d do his special dance, “the turtle,” in which he stretched out his arms and waggled his fingers towards his partner the way a male turtle woos a female.

As I stepped from the elevator during the first year, I would feel a small thrill hearing Tom’s pleasant tenor voice above the chatter. He’d be laughing or excitedly explaining some impossible theory to a fellow resident. The activities director called him “The Mayor” because he tried to help others with their problems (notably, “How can I get home?”). As speaking grew difficult, he still managed a quip with Martin, our family doctor. “So, Tom, your heart is running fine. How’s your bowel?” “Not running, fortunately!” Tom shot back.

Even before his illness, Tom could be as obstinate and willful as a two-year old. At 305, if staff suggested it was time for a diaper change, he’d argue and might even take a swing at them. Several times, as alarms rang, he stationed himself in the elevator for as long as an hour, crashing his Nitro into the cab wall, demanding to go teach his biochemistry class. Later he’d smile sheepishly, “I gave you a hard time, didn’t I?” He’d high-five the men and kiss the women’s hands. No wonder the staff loved him.

In July 2023, just before his 90th birthday, and just as he was recovering well from the June pneumonia, it caught him again. This time he returned from the hospital on heavy oxygen and with a blackened pressure wound on his left heel. He now required around the clock private duty aides to keep him from pulling off his oxygen and to turn him in bed every two hours. He probably got pneumonia from inhaling food—a common consequence of Alzheimer’s—so we began to feed him purees. Over the next months his lungs never healed. Worse, he developed a second pressure wound, this one on his butt from sitting too long in a wheelchair.

By then I had put him into the Calvary Hospital hospice program. The wonderful Calvary nurses came three times a week to check his heart and lungs and dress his wounds. The Calvary social worker helped me arrange the trip home. I asked the nurses why they would take a job where just as they got to know a person well, that person would die. Kaitlin from Idaho said she found regular nursing too rushed, too focused on treatments, and not enough concerned with the comfort of patients. Maggie from Paris had been an economist with a financial firm. After a long recovery from an undiagnosed illness, she turned to nursing in gratitude for the care she had received.

I hated taking Tom away from a familiar place with staff who adored him. But once he could no longer sit in the wheelchair and enjoy the activities, there was no point staying—or paying the staggering cost of 305 and the private aides. I couldn’t tell if Tom realized he was home. Home looked different anyway with a hospital bed, a big oxygen machine that went Ssssss-THUMP, and piled-up cases of incontinence supplies. But he kept smiling. When friends came for Thanksgiving dinner a week later, he sat up in bed watching us with obvious enjoyment.

From his bed Tom could also watch Tommy the orange canary chirp and hop around in his big cage. I had bought Tommy five years ago from a Seattle breeder in tribute to one of Tom’s favorite stories: As an elementary school science teacher, his first job out of college, he bought pairs of canaries for the fifth graders to watch them mate, build nests, lay eggs, and raise chicks. I named the bird with Tom’s childhood name, Tommy. Tommy sang like a whole flock of little birds: whistles, warbles, buzzes and burbles—until he stopped last year. In a terrarium next to Tommy, a new pet, Flame, the orange bearded dragon lizard, basked under a heat lamp. Only her eyes moved.

Back home, I found myself responsible for everything 305 had provided. I ordered pureed food from Mom’s Meals in Iowa. Fourteen frozen packages a week, plus assorted deserts. It wasn’t bad, but already too much for Tom. I often ate his leftovers. Then there were the meds: pills crushed and mixed with applesauce: Seroquel to calm the agitation of dementia, thyroxin, Tylenol for fever, and senna for constipation. Since his return from the hospital, there were opioids: a fentanyl patch every three days and 5 ml of liquid morphine morning and night and as needed. The opioids controlled the pain of his wounds and even more important, the distress of shortness of breath. I gave him extra morphine when he went into spasms of panting.

The private duty aides, from the Right at Home agency, followed him home. I now found myself apprenticed to Amanda, a virtuosa in the fine skills of positioning a bedridden patient. It looks easy: you just roll them from side to side, tucking diapers and disposable pads under them. You use a pull sheet to drag them up the bed when they inevitably slide down. All without leaving a wrinkle that could damage their skin. In fact positioning was difficult, even with two people, one on each side. Even harder because Tom’s left leg had frozen bent at a right angle, with a fat blue boot to protect his damaged heel. He yelped in pain as we lifted the leg. I never quite got all the positioning moves right. Amanda often had to remind me, “Polly, put on your gloves.”

Most of Tom’s left heel was black, with a crack around the bottom callus. The hole in his left buttock looked like someone had taken a cookie cutter to it. Once the skin broke, the wounds inevitably became infected, oozing a thick sticky yellow mixture of pus and dead tissue. The hospice nurses cleaned and bandaged the wounds, applying metronidazole or a honey mix. As I leaned over Tom to kiss him, a charnel odor would catch the back of my throat, almost making me gag.

I researched pressure wounds online. They are common among bedridden patients, especially elderly or paralyzed. They can happen if blood circulation is cut off for only a few hours. Diabetics, people with arterial disease, and injection drug users get similar non-healing deep tissue wounds. Such wounds can be cleaned out (“debrided”) surgically, but that requires cutting healthy tissues and may aggravate the injury.

Suddenly I remembered something. As a teenager and occasionally since, I’ve kept bugs as pets—a praying mantis, a pair of giant Madagascar hissing roaches—and as food for my reptile and amphibian pets: fruit flies for spring peeper froglets, crickets for chameleons, today, dubia roaches and mealworms for Flame, the orange lizard. I once put out rotten meat to collect flies and maggots for my turtles. Maggots! For thousands of years the recommended way to clean wounds, and today, along with leaches, enjoying a revival as a bio medical tool.

“Maggots?” I asked Kaitlin and Martin. Neither had heard of maggot therapy. Martin had been one of Tom’s first medical school students.

Online I found Monarch Labs, the sole US supplier of patented medicinal maggots. These are sanitized larvae of our familiar green bottle fly. I watched the instructions on You Tube, and corresponded with the founder, Professor Ronald Sherman of UC Irvine. With a prescription from Martin, and for $446 including dressing and overnight Fedex, I held in my hand a 3” vial containing pinhead-sized maggots crawling on a damp piece of gauze. I assembled the dressing: a kind of stick-on gauze cage to keep the maggots in while letting them breathe. While Kaitlin and Amanda held Tom in position, I poked the maggot-gauze into the butt wound and slapped on the dressing.

What could I have thought I was doing? I was conducting a science experiment on a dying man. But Tom was a scientist. In his right mind, he would have loved it. And while the wounds would never heal, cleaning them would reduce the pain and stress of chronic infection.

That was a Wednesday afternoon. Maggot treatments take less than 48 hours. Maggots don’t bite. They release enzymes to dissolve dead tissue and antibiotics to kill bacteria. Then they slurp the resulting puree. By Thursday night, I could see the maggots, now the size of rice grains, squirming under the gauze. Friday morning—Aagh!—the maggots had escaped and were roaming in packs under Tom’s diaper. As Amanda tried not to watch, I scooped them up in a gloved hand and threw them in a bucket of hot soapy water. A few had made it out of the bed and were humping their way across the floor in search of a safe place to pupate.

When Maggie arrived Friday afternoon she gasped in astonishment. Most of the wound’s interior was a clean shiny pink.

The next week I repeated the procedure on Tom’s heel. Again, where they weren’t obstructed by dead skin, the maggots cleaned the wound to shiny pink. Another round or two of maggots and the wounds would be totally clean. But that was not to be.

Saturday December 9 was a good day. “Tom, I’m sitting you up,” said Amanda. “Yes ma’am!” he burst out, his first words in days. We watched Hallmark movies on the Peacock channel, and later David Attenborough on Netflix. Tom smiled and ate his Mom’s Meals and applesauce with enjoyment. But in the morning of December 10, Elaine the night aide told me Tom had refused water or apple sauce all night. Amanda and I tried all day, but Tom clenched his teeth and turned his head. He even pushed a moistened swab away from his lips.

Monday morning I woke up and realized—I had assumed Tom no longer understood what was going on—I realized that, in his famously stubborn way, Tom had decided to die. Through the week, Amanda and I kept trying and Tom kept refusing. Yet he still smiled faintly when I held his hand and kissed him. “Tom, I love you.”

“Dehydration,” said Kaitlin, “is a good way to die. It makes you sleepy until you don’t wake up.”

Kaitlin and I decided not to bother Tom with the next shipment of maggots. I tossed the vial in the garbage. “Bye-bye baby maggies. No lunch for you.”

Tom grew weaker and sleepier as the days passed while friends and his daughter visited to say goodbye. He no longer yelped when we moved his leg. I had stopped wearing my wedding ring because he squeezed my hand so hard it hurt. Now he could hardly grip at all. His skin became clammy and yellow, like a Hieronymus Bosch corpse. His lips stung with salt when I kissed him. His mouth hung open and I couldn’t close his eyes. “Tom, if you can still hear me, I love you.”

Sunday afternoon, December 17th, the sun shone brilliantly through the window. I riffled through the New York Times as Amanda watched Tom. “I think he stopped breathing,” said Amanda. As I looked, Tom took another breath. After a long pause, another. We waited.

“We should check his pulse,” I said. No pulse. I checked my own wrist. No pulse. Was I dead too? “Tom, wherever you are, I love you.”

Amanda wrote the time in the notebook we kept: 3:07 PM

“Do you need a hug?” said Amanda.

“Yes, I do.” (Bless Amanda. She loved Tom too.)

For a while I sat stunned. Right on schedule, as the memory doc predicted, it was over. I had grieved years ago, when Tom’s dementia became unmistakable. Like when he insisted on paying a $200 cash tip for a $150 meal. Or when he ordered eight My Pillows with cases from a nighttime TV ad. I recalled that awful train ride, returning from Christmas with my mom in Washington DC, 2015. The prior three years, Tom had worked on a review article on his theory of biological membranes. It would be his magnum opus. He called it his Nature paper, destined for the top science journal, Nature. I edited draft after draft, telling him he should send it to colleagues for comment, but he kept tinkering. As we sat in the café car, Tom pulled out the manuscript for another review. “You’ve been making changes without my permission!” he suddenly snarled at me. “You’ve been stealing my ideas! I want you to promise you’ll never touch my things again!” “Yes, Tom,” I whispered, hunching down as his rant continued. For 30 years, I had been editing, illustrating, and discussing his papers. Sometimes he credited me as co-author. Poof! In a moment I realized that not only was I losing my husband, but that his—and my—significant scientific paper would never be published.

Friends had introduced me to Tom in 1985. His wife had recently died after years of emphysema, and I was mid-divorce. Placed in an orphanage as a small child, he worked his way through high school, college, and grad school to become Professor and Chair of Chemistry at the City College of New York (CCNY). He taught biochemistry at City University of New York (CUNY) Medical School, which he founded in 1973 with then CCNY President Robert Marshak. I was a recent PhD in economics, 12 years younger with two small children. On our first date, he captivated me with his broad smile and his habit of widening his eyes in delight. Bald with a black fringe and bold black eyebrows, he stood a stocky 5 feet 3 inches, two inches shorter than me—yet he filled the room wherever we went. His friends became my friends, his projects my projects and his quirks mine. (He insisted on leaving our front door unlocked, he said, so that friends could walk in anytime.) I struggled to maintain an independent career as an economics writer and professor. Meanwhile I raised my kids and managed the pair of brownstone apartment buildings he had bought with his first wife and where we lived. Often it seemed that while he captained our little ship, I tended the engine below deck.

In 2017 I quit teaching to take care of him. I helped edit his final project: his autobiography as told to Mindy Lewis: A Curious Life: From Rebel Orphan to Innovative Scientist. By then, I remembered his funny stories better than he did. When he began to wander, I put a tracker watch on his wrist to follow him on-line. Friends called me a saint, and advised me to “take care of yourself.” A saint? I felt had no choice. Any spouse would do the same. But still, a suspicion would sneak up that even before his illness I used his dominance as an excuse to neglect my own work. To leave projects unfinished, or to not resubmit articles once they were rejected. Fear of failure, perhaps. While Tom kept me busy, I could always postpone. No longer.

I stood up. Tom was dead and I had tasks to do. I called Tom’s daughter and spoke to her husband; as a high official in the Biden Administration, she was of course at work. I called close friends. I signed into Wikipedia and entered the date of death in Tom’s profile.

Tom had wanted to donate his body to CUNY Medical School. But they weren’t accepting bodies at this time, so I signed him up with Einstein.

“Condolences for your loss, ma’am. Is he in a fetal position?”

“No, but his left leg is bent up.”

“Sorry, ma’am, but then we can’t take him. We only take them straight.”

“Straight? How was I supposed to know that?”

“It’s in the contract, ma’am.”

“But he was straight when I signed the contract!”

For lack of Plan B, I called Riverside Memorial Chapel, where prominent West-siders go to die. “Is he in hospice?” The operator put me briefly on hold. “They are on another job, but they’ll be there in three hours.” “They” turned out to be a mom-and-pop operation, a tall man and his petite wife. They tugged Tom onto a folding gurney the size of an ironing board, zipped him into a white mummy bag, and strapped him down. I remembered how Tom hated seat belts. As they wheeled the gurney into the elevator, they tipped it up, leaving Tom hanging from the straps in his white shroud. “Good-bye Tom. I love you.”

Alone in the apartment for the first time in weeks, I thought, what would Tom do? He’d do what he loved most: celebrate with the big New Year’s Eve party we’d held every year until Covid. I blasted out a combined death announcement and party invitation. And indeed, Tom’s ghost joined us. I could almost hear his voice around the corner, greeting guests, making sure they got their bubbling orange punch or honey-baked ham. As guests prepared to head for the Central Park fireworks, I could almost see Tom’s compact figure standing on the coffee table, excitedly waving his arms and barking directions while he handed out plastic cups and chilled bottles of champagne. In the park, at the crack of the first rocket signaling the new year, I could almost feel his arms around me and hear his voice say, “I love you, sweetheart.”

“Tom, I love you too. Happy New Year!”

Two weeks later, I picked up Tom’s ashes at Riverside. A short elderly gentleman in a dark suit escorted me to a waiting room. “I’ve been a l  icensed mortician for fifty years.” The waiting room looked like the set for A Doll’s House: Windowless, dark wood paneling, dark green floral wall paper, shabby plush furniture, a big gold-embossed leather desk, and a peculiar chair with a right angle back, designed to fit into a corner. The mortician reappeared with paperwork and a box. “Your ID, please. Can’t be too careful.” As I sat across the desk from him filling out forms, I became aware that the man was positively embalmed in a powerful cologne. By the time I finished, my eyes were watering. I pulled out a tissue.

The little black box was surprisingly heavy. “Mostly bone,” said the mortician. And, I thought, a titanium hip and dental implants. Walking home with the box in my backpack, I felt an irresistible urge to talk to it. “Tom, are you there? I miss you. I love you.”

As I answer the dozens of condolence notes and emails, I’m reminded over and over what an extraordinary man I married 38 years ago. Colleagues write of his brilliance, energy, creativity, sense of humor, and commitment to the public good. Former students mention their gratitude for inspiring them to a career in science. So many tell how he went out of his way to help them, whether to find a summer job for their kids, or to accompany them to a doctor’s appointment, or simply to listen sympathetically to their problems. They write of his sheer joy in living, his enthusiasm, optimism, and perpetual smile.

I’m not sad. Just thinking of Tom makes me smile with the joy of loving and being loved. But now what? How to fill the space that he left? Somewhere, I hear him saying, “Just go for it! Finish your work and take care of your friends.” I feed a plump roach to Flame and a fresh piece of banana to Tommy. As the days get longer, maybe that sweet bird Tommy will sing again.

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