On the day before my mother died, she gave my father a list of demands. He wrote them on the back of an envelope and showed them to me as he left the intensive care unit. There, in his clear block handwriting,
it read:
CREAM
WHISKEY
HEROIN
My mother was not herself. And yet, she was completely herself. When Mom’s liver stopped working, her brain, which we had always considered loopy, grew addled. But she was still funny. She hallucinated
monkeys on unicycles circling her bed. She learned that Michael Jackson had died, “probably from all that plastic surgery,” she said. She remembered Sarah Palin, and thought she was a twit.
Mom died, at 67, in 2009, but lately I’ve been reflecting on her last days. I’m applying to medical school, and her story keeps coming up in my essays and interviews. Her death spurred me to apply,
partly because it gave me courage — nothing in med school could be worse than watching the way my mother died. Her death was so grisly that I vowed to help change the way people die in America.
There were ants crawling on my grandmother’s feet in the hospital. My mother and I slapped towels at the insects, scoured the rusted metal legs of the bed, moved my unconscious grandmother’s limbs
to search every wrinkle of the dingy sheets. The ants were a portent, I thought. This was all my fault. My grandmother was going to die in this filthy hospital, far from everything she knew and loved, because
of me and my insistence on medical intervention.
A few days before Christmas of 2013, my mother called me in New York from Kerala in India to tell me my 90-year-old grandmother, Laxmi, had fallen on her way to the bathroom. By New Year’s Eve my grandmother
wasn’t eating or talking. To my increasingly panicked questions about why she hadn’t been admitted to a hospital yet, I got vague answers.
“What can they do for her? We can look after her here. Anyway, she’s afraid of hospitals,” my mother said into the telephone when I nagged her.
I had moved to America in 1997 and missed the deaths of everyone I loved. A penniless grad student, I had lived the immigrant nightmare — first my father, then my grandfather had died without me beside
them. Their passing had been reported to me from 8,000 miles away, over the phone.
This time around, I was determined to be there. On the flight over I thought of the ritual we had. Every time I came back to what my grandmother liked to grandly call “our ancestral house,” I would
drop my bags on the hot concrete of the courtyard and shout “Ammamma.” She would answer from inside, her voice clear and calm, as if I had never been gone. I always felt as if she
had been waiting in that precise spot for the years it had taken me to come back.
But when I arrived at the house after 26 hours of travel, my grandmother stared up at me from her bed as if she’d never seen me before. Her pupils hardly moved. That’s when I realized that she
could slip out of the world without ever knowing that I had come back to be with her.
I had ordered the rickety ambulance that brought my grandmother to the hospital. “Let her be,” my mother said, but I overrode her objections. As I watched the ants scatter, I wondered at my own
motives. Was I hoping that the doctors would revive her enough so that she would know I had come? That I loved her enough to fly halfway across the world? Had my guilt at missing those other deaths led me
to make such drastic amends? I had no answers.
At least she didn’t know where she was. She would have been mortified. I had never seen my grandmother appear in public in anything other than a cotton voile sari in her favorite pale blue or lavender,
her knee-length hair in a soft bun. She had the classical beauty one saw in the faces of the goddesses in the vivid calendars that hang in Indian stores. In the hospital they had her in a cheap nightie,
purple with garish pink flowers, its neckline gaping.
“The next 12 hours are crucial,” the doctor had said, pointing to a smudge on the CT scans of my grandmother’s brain. Her fall had made a vein burst deep inside. What he was really saying
was that it was possible that she would never open her eyes again, never see my face again.
When we complained about the ants, the nurse shrugged. She nodded toward the cloth screen that divided our narrow room. There was a family on the other side of the partition. Their patient was an eight-month-old
baby with meningitis. The relatives who came to see him brought food in giant tiered stainless steel tiffins. We were assailed at all hours by the smell of chicken curry or the sound of a visiting cousin
crunching potato chips. “Blame them,” the nurse said.
My grandmother had kept house for her headmaster husband in small villages until they had retired to our remote farm. I had always thought of her as pure, someone apart from our world, untouched by our chaos.
Growing up, she had played hostess for her famous father who worked for the British Raj. She had mastered tennis in long skirts, played the violin for guests. She had an old-fashioned notion of hospitality;
I couldn’t be rude to people who shared the room with her.
The baby screamed through the day and night. His mother, barely 17 years old, stuck her nipple despairingly into his mouth. When he turned his head violently away she broke down sobbing.
“You are lucky to get even this room,” the ward matron said, smug and indifferent behind the Plexiglas of the nurses’ station when I begged for a private room, insisted we could pay.
I imagined my grandmother falling out of the world, her leaving accompanied only by the endless wail of the child. It was a version of purgatory, a very specific karmic punishment devised by a witty god who
liked contrasts and paradoxes, the old being sent off by babes in arms.
I stood beside my grandmother’s bed and willed her to wake up. I am sorry, I said, hoping she would hear. This was a mistake and we would go home soon, to her room on the farm, with its murmuring radio
and the cool green light from the trees in the courtyard pouring in through the windows.
Through all the commotion in the hospital room, my grandmother continued unconscious, alone, hidden deep. The bottles of saline and blood, the expensive injections didn’t pull her out. Outside the window,
the red dust of the parking lot sifted over the car that would take me to the airport. I had five days before I had to leave to start teaching my semester at New York University. “Pray,” my
mother said.
The doctors recommended an operation to relieve the pressure on my grandmother’s brain. They called my mother in to take possession of my grandmother’s dentures. Without them, her chin was longer
and more prominent; her mouth fallen in. It was unsettling: Suddenly, my grandmother was an old woman.
Hours after the operation and with 16 hours to go before my flight, my grandmother defied the auguries and woke up. The baby’s relatives from the other side of the screen joined us as we circled her bed.
My grandmother looked up at us as the baby’s mother, swept up in the general jubilation, patted my grandmother’s shoulder. So nice of you to visit, my grandmother assured the girl.
Tell your mother I asked after her, she said.
When my grandmother finally turned to look at me, she gave me her brand-new toothless-baby grin. “When did you come from America?” she said, lucid for a moment. Then she sailed off again: “Child,
ask your grandfather to come downstairs,” she said of her husband who had been dead for 14 years. “Tell him dinner is ready.”
If only that was the happy ending to this story. After her brief flare, my grandmother slipped back into the dark. Bedridden, unable to move her hands or legs, barely sentient, she lived on for another year.
My mother nursed her day and night at home, spooning water into her mouth. Once I got back to New York, I couldn’t find another $1,500 to visit her again.
So I called instead, every day. I made my mother tell me every painful detail about my grandmother’s condition. Unable to swallow anything but rice and vegetables ground into a mush, her skin flaking
from dehydration, her bent limbs curling into themselves, her end was relayed to me inch by suffering inch. I had been upset when the doctors removed her dentures, but now everything that made her familiar
was gone. Her soft glowing skin, her love of Cadbury chocolate, her keen interest in news stories of gruesome murders — everything fell away.
I never brought it up with my mother, but I kept circling back to the same question: What if I hadn’t insisted we take her to the hospital? She could have died whole, intact, still the person she was.
I had prolonged her suffering and my mother’s pain with my stubborn belief in the power of medicine to fix things.
My grandmother died last January, more than a year after I had said goodbye in that hospital room. I felt a terrible grief and then relief. It was over. For all of us.
It was only later, thinking about that day when I had seen my grandmother for the last time, I remembered how I had walked to the bed and bent down to touch her feet in the traditional Hindu way. We touch the
feet of our elders on important life occasions like a wedding day or at the beginning of long journeys. Even in her muddled state, she had remembered the gesture she had used all her life. Her hand had rested
on my head for an instant. I can still feel the weight of it. She must have forgotten the ritual benediction, “Long life.”
Instead she said, “Come back soon. Tell everyone in America I asked after them.” I have my guilt and regret, but I also have this. Her last touch, to take into the years with me. I like to think
she knew, somewhere deep inside, that I had come back.
Meera Nair is the author of the short story collection “Video” and is working on a book of stories set in Jackson Heights, Queens.
Votive candles for sale in South Gate, Los Angeles.Credit Monica Almeida/The New
York Times
In my first year of practice in palliative medicine, I made house calls to patients in South Los Angeles. My patients all lived in neighborhoods that ranked among the city’s lowest in both income and life expectancy. In these neighborhoods, people die an average of 10 years earlier than those who live less than 10 miles away. Many of my patients felt
that they had barely lived their lives when I showed up, ostensibly to help them “die with dignity.”
Death may be humanity’s great equalizer, but the inequalities suffered in life – leading to a shorter life expectancy – become inequalities in the experience of dying as well.
When I began my career, I had naïvely assumed that, if time were short, who wouldn’t prefer the familiarity of home and palliative medicine’s focus on quality of life to the chaotic
mess of the hospital? But I’ve learned that even when my patients accept hospice services, the proverbial “good death at home” is often out of their reach. Fully experiencing the benefits
of home hospice requires resources: involved, dedicated family members. Money to afford caregivers, particularly in the absence of involved family members. A neighborhood whose local pharmacy actually stocks
opiate medications for severe pain. Insurance that covers stays in nursing homes so that family members can simply be family members instead of caretakers.
Without these luxuries, which so many others take for granted, dying at home could actually be less comfortable than dying in the hospital. Over this past year, I have stepped across the wide gap between
my idealistic conception of hospice care and the reality of providing it amid life circumstances that shape the circumstances of dying.
“I need to talk to you,” my 90-year-old mother announced in a stern tone usually reserved for reprimanding a child.
Visiting her in Florida, I noticed increasing balance problems and short-term memory lapses, early signs of Lewy body dementia. She perched on the bench of the organ my father had learned to play in retirement.
And she began to recite, like someone eager to have her past documented by an oral historian:
“I grew up in an orphanage. My mother didn’t want me.”
I froze — eager to listen, afraid of what she’d reveal.
When my husband died from cancer last March at age 37, I was so grief-stricken I could barely sleep. One afternoon, I visited his grave — in a field high in the Santa Cruz Mountains, overlooking the Pacific
Ocean — and lay on top of it. I slept more soundly than I had in weeks. It wasn’t the vista that calmed my restless body; it was Paul, just there, under the earth. His body was so easy to conjure
— limbs that had linked with mine at night, soft hands that I had grasped during the birth of our daughter, eyes that had remained piercing even as cancer thinned his face — and yet, impossible
to hold. I lay on the grass instead, my cheek against the ground.
I had loved Paul since we met in 2003 as first-year medical students. He was the kind of person who makes truly funny people laugh (as an undergraduate, he visited London in a full gorilla suit — posing
by the gates at Buckingham Palace, riding the tube). But he was also deeply intellectual. He considered following his master’s degree in English literature with a Ph.D., but entered medical
school instead, yearning, as he later wrote, “to find answers that are not in books … to keep following the question of what makes human life meaningful, even in the face of death and decay.”
We married on the shores of the Long Island Sound before driving across the country to start our residencies. In the hospital, we worked 80-hour weeks; outside of it, we hiked the winding trails near our California
home, holding hands and planning our future.
A decade ago, while I was still a fledgling doctor in training, I worked in a tiny rural hospital in a village in West Africa. By our American standards, the word “hospital” would have been a fictional
exaggeration of this barest-bones facility, but here, on the Liberia-Sierra Leone border, it was the only place that offered people access to Western medicine, should they seek it. The next hospital over
— bigger but not much shinier — was at least a six-hour drive away in a four-wheel-drive all-terrain vehicle on a good day, without any rains melting the treacherous dirt roads. About two weeks
after I arrived there, I was caring for a young woman who was seriously ill. At that point, I was bold enough to take charge medically, but still barely able to see the outline of the big picture —
the cultural contours within which I should have been operating.
She was not much older than I was, and she suffered from profound heart failure from severely worsening untreated tuberculosis. I can still see her expressionless face and her skeletal frame on the dirty foam
mattress, as orange dust blew in from the nearby window over her, settling in her hair. A weak grasp of my fingers, a flutter of her eyelids was what I came to expect on our daily rounds, but on this particular
day in April, her body refused to fight this futile battle anymore. There was no agonized gasp for air, no last whispers. Her body simply came to an unceremonious stop. A gust of wind puffed the hospital’s
sheer white curtains into a wash of peace and serenity around her — it was O.K. to let go now.
But I didn’t — couldn’t, really — see it that way. From where I stood as an emergency room doctor from Boston, this was strange and alien. I went to medical school and trained to
preserve the sanctity of human life. Beyond all else, that was a doctor’s ultimate purpose. To do nothing, especially when the patient was so young, seemed akin to murder to me.
“Have you ever been there when someone dies?” people ask when they find out I play the harp and sing for dying patients. It is the same tone I hear when someone asks, “Do you think you will
have more children?” They want to talk about it, but they worry that the answer might be a secret. When I tell them I have been there at the moment of death, though not as often as they might suppose,
they ask, “What is that like for you?”
I tell them it is intense. I wait to see if they would like to hear more, or if they have their own story to tell. I am a music thanatologist,
trained to offer music in a prescriptive way, to create a calm space for dying patients and their families. I focus on the patient’s breath as I play the harp and sing. With this rhythm as my guide,
music can echo and reflect the dying process. The patient leads the music vigil with his or her breath, right in the middle of the hum of machines, the trill of cellphones, and the voices and nose-blowing
of family. It often feels to me as if the room becomes larger, warmed by music and filled with the courage of families preparing to say goodbye.
The people I play for are incredibly gracious. They say the music is relaxing and beautiful. They invite me in to their moments of vulnerability. I once played for a patient who was struggling with complicated
symptoms. She was uncomfortable and having difficulty speaking. But she asked me to stay, and at one point during the music vigil she mouthed the words, “You are blessing my soul.”
During the months following my father’s diagnosis, I accumulated a trove of black dresses suitable for any season: a stretchy cotton knit tailored twice to achieve a respectable, but un-dowdy, hemline;
a cap-sleeved wool blend trimmed in wayward chiffon; a flouncy crepe with a peekaboo keyhole sewn solemnly shut; a strait-laced lace, finished flawlessly at the neck, cuff and knee; a slouchy shift, gathered
at the shoulders.
The dresses were part of my multi-tiered preparation plan: No, I couldn’t influence the errant cells collecting in Dad’s temporal lobe, but my own frontal one would manage their fallout. State-of-the-art
genetic mapping to target treatments? Ordered. A “cancer concierge” to scour the Eastern seaboard for a clinical trial should the tumor regrow? Hired. The perfect winter, spring, summer or
fall thing for the worst case – no, the last case – scenario? Found compulsively on the Internet and up and down Rodeo Drive.
Only once before, a decade ago – when also searching for some semblance of control over a life-changing event – had I experienced such an irrepressible urge to exhaust every possibility in the
marketplace. Back then it was a hunt for the perfect crib, nail clipper, high chair, stroller, lounger and tummy time mat. My future life as a parent was as unknowable as my yet-to-be-born son’s face,
but at least I could be certain he would don the softest onesies ever manufactured.
Now a year, two weeks and four days since “glioblastoma” (a word nearly as ugly as the disease) was first uttered, my home phone rang. Outside, the tenacious Los Angeles sun cracked through the
June gloom. Across the country, the protocol had failed. Dad’s daily decline was too precipitous to qualify him for any clinical trial. The savings I’d spent on the consultant were wasted,
useless. It was time to pack.
Ethan Butler’s best chance to truly live was for his parents to accept the fact that their infant son would die.
Born with a congenital heart defect, Ethan had lifesaving heart surgery when he was 10 days old in the spring of 2008. Unfortunately he suffered a very rare complication, a major stroke that left him severely
brain damaged. Physicians from different disciplines told Ethan’s family that their little boy had limited brain function, for which there was no cure, and that a ventilator was keeping him alive.
I was then invited by the cardiology team to meet Ethan and his family. Our interdisciplinary team has met the families of many children facing life-limiting conditions. Each case is heartbreaking, tragic and
utterly unfair in its own way. Our role at Children’s Minnesota – one that still goes unfilled at many pediatric hospitals – is to work with families on a plan to help their child live
as long as possible, as well as possible.
The family told me about Ethan’s short life and showed me photos of him.
I finally asked, “Given what Ethan is up against, what are you hoping for?” Read more…
I spent the last Sunday of my father’s life sitting by his bed on the hospice unit in a small Connecticut hospital. He was dying of pneumonia, once called “the old man’s friend.”
There was a nondenominational chapel down the hall, and a sheet cake in the kitchen. His hand was warm. Reassured by the quiet presence of the hospice nurses and feeling the mysterious quickening of life
through his veins, I gave over to being his daughter and letting him be my father one last time.
It had been six and a half years since I’d felt purely like his daughter. When he was 79, a bad stroke (followed by a succession of mini-strokes, vascular dementia and creeping blindness) ended my father’s
role as paterfamilias and transformed my mother and me from wife and daughter to exhausted caregiver and untrained medical advocate. We soon found ourselves in the maw of America’s
fragmented fee-for-service medical system, a notoriously bad fit for the frail elderly. Ours is a story familiar to many families: shuttling my aged father to specialist after specialist, each focused on
a single crumbling organ — his brain, his heart, his bladder, his colon, his eyes. Each ordered tests, carried out Medicare-reimbursed procedures, and rarely, if ever, talked to one another. If it
hadn’t been for my mother’s nonstop caregiving and my parents’ stoic medical minimalism, I have no doubt my father would have joined the sickest 5 percent of Medicare’s patients who run up almost half of its costs.
My father, and others like him, suffered because, at the tail end of life, Medicare continues to pay well for fix-it treatments focused unrealistically on cure and underpays for care and desperately
needed home support. In his last six years, it paid more than $80,000, all told, for treatments that included a hernia repair, a pacemaker, and $24,000 for the injectable drug Lucentis which, sadly,
failed to arrest the macular degeneration that was robbing him of sight. It covered a series of ambulance rides, emergency room visits and a hospital stay after he fell repeatedly on throw rugs and down
the stairs, once breaking his wrist, falling on my mother, and leaving her black and blue from toe to hip.
