The Death of an Indispensable Person

Carmen Ayala, caretaker for Adele Halperin, the subject of The Atlantic’s September 2023 cover story, has died. She was 81.

What do you call a person who’s central—indispensable—to the happy functioning of your family, yet is in no way tied to it by blood? And how do you describe the grief when that person is gone?

Carmen Ayala was that indispensable person to us. For 24 years, she took care of my aunt, Adele Halperin, who could not take care of herself. My aunt died on May 7, just as I was completing a long feature about her for this magazine. And on July 19—a scant two days after the issue had been shipped off to the printer, a mere 10 weeks since Adele had passed away—Carmen died too.

To my astonishment, I was more distraught over Carmen’s death than I was over my own aunt’s. Here was a woman who had loved Adele as if she were her own, coaxing her out of the brittle cortex of trauma, restoring her to full dignity and humanity. My family, I thought, would need years to fully express our gratitude, and I had foolishly counted on them, though Carmen was 81 and in failing health. She seemed too indefatigable, too indomitable, to do something so commonplace as die. That her heart might one day give out struck me as both impossible and indecent: Carmen was defined by her heart.

From the September 2023 issue: Jennifer Senior on the ones we sent away

The backstory: In 1953, at just 21 months, my aunt became a ward of New York State, not out of cruelty but custom—she was developmentally and intellectually disabled, and in those days, most doctors pressured the parents of such children to institutionalize them. My grandparents dutifully did as they were told, putting Adele first in Willowbrook State School, whose name eventually became synonymous with filth, abuse, and neglect, and then Wassaic State School, which was only marginally better. My aunt didn’t move to residential care until 1980, and even then she suffered, attending a day program in an old factory whose clattering machinery overwhelmed her senses. The family care she received back then was likely adequate, but nothing more; the few times my mother visited her were awkward and bewildering. The woman who cared for my aunt did little to help my mother understand who her sister was or what she liked, to give her a sense of what made her sister Adele.

But in 1999, Adele moved to Carmen and Juan Ayala’s house. From the moment Mom and I stepped into their home, we could tell that something was different. It was a place full of in-jokes and familial patter. “Who’s the turkeyhead?” Juan liked to say to my aunt. “Daddy!” Adele would answer, pointing at him, and Carmen would hoot with laughter. If my aunt wanted perfume, Carmen bought her perfume. If my aunt reached for a bottle of red hair dye in Walmart, Carmen bought that too and dyed her hair red. Carmen was forever on the hunt for shiny things—gold-plated earrings, coats with big brass buckles, baseball hats with rhinestones—because my aunt loved bling. Carmen pureed Adele’s meals (my aunt had lost all of her teeth) and organized Adele’s clothes by season and kept meticulous calendars and records, making sure my aunt never missed a single doctor appointment.

I could never have gotten a sense of who Adele was if not for Carmen. She was a close and loving observer of my aunt’s habits and character, and that is what my family needed in order to get to know and understand her, this close relation who’d been written out of our family lineage at just 21 months. Carmen was the one who told me stories about my aunt’s hilarious fastidiousness, her insistence on order and precision. During my final visit with Adele, Carmen quietly summoned me to the bathroom, where my aunt had just showered and was now slowly wiping all the bubbles off the brass handles and bathtub rim: too much mess. A shower should be free of bubbles.

Carmen had an individual sense of everyone she cared for, and she was possessed of infinite patience. When my aunt first moved into her home, she had regular tantrums and a robust potty mouth. Other caregivers would have given up. Carmen did not. She was obstinate in her persistence, talking quietly and patiently to Adele, recruiting her into simple household chores, until the two of them formed a bond.

Over time, that bond became profound. It was Adele who popped into Carmen’s doorway each weekend morning with, “Hello, Mommy! How are you doing today, Mommy?” It was Adele who went into Carmen’s room to comfort her if she was feeling unwell. When Adele died, Carmen was crushed. “I’m always looking for her,” she would say. “I look at the clouds when I’m outside; when I’m in my room, I wait to see if she’ll pass by.”

And shortly before Carmen died, it happened: Adele appeared to her. She hadn’t even told her youngest daughter, Evelyn, about it, though she lived nearby and they spoke all the time. Evelyn learned on the day of her mother’s funeral, when she was chatting with Adele’s former nurse. “I think Adele was waiting,” Evelyn told me. “She died first to wait for my mom. That’s how I see it.”

And it’s a gorgeous notion, this idea that my aunt may have died just before Carmen in order to greet her in heaven’s doorway. But there’s a very different way to interpret this chain of events. Last fall, my aunt and her roommate came home from their day program with COVID. Yet someone still had to cook for them, care for them, nurse them back to health as they were ailing in bed. And that duty fell to Carmen, as it always did, and as these jobs so often do: Immigrant and poor women, often of color, are the silent underclass that cares for the country’s most vulnerable, making possible the lives of those with more education and options.

From the October 2010 issue: Autism’s first child

Carmen already had Sjögren’s syndrome, an autoimmune disorder that in her case manifested most floridly in pulmonary hypertension. But when Carmen got COVID—which she inevitably did, just days after Adele and her roommate came home with it—she never truly recovered. Oxygen tanks became ubiquitous features in her home; she now required them morning, noon, and night. When my aunt lost consciousness from a massive heart attack this May, and Carmen and Juan had to lift her out of her bed to administer CPR, Carmen still had her oxygen tank in tow.

I can’t shake this image. Carmen, yoked to her oxygen tank, still exerting herself on my aunt’s behalf.

Nor can I stop thinking about Juan. He is joy incarnate, a mischievous prankster, the soul of the house. Only four months ago, that house had five people in it; now it is on the market. My aunt is gone. His wife is gone. The two other residents have been relocated to other homes. (God, the confusion they must feel.) Juan recently left for Puerto Rico, to go live with one of his children.

He is lost without Carmen. And who wouldn’t be? She was a fortress of strength. She came to New York from Puerto Rico when she was 13; went to work at various factories in Lower Manhattan starting at 16 (until the day she died, she couldn’t eat a hot dog, having seen, literally, how the sausage got made); and then worked as a cleaning woman, both in schools and in Midtown office towers. She eventually opened a day care in her home in the Bronx. She also fostered children for a time. She did both of these things while caring for four kids of her own, basically on her own. (She met Juan later.) Her oldest child died of a blood disorder.

“She was a provider,” Evelyn explained to me. When Carmen’s brother’s Staten Island house burned down, she gave him her living-room furniture. When her sister went through a difficult spell, she took her in, along with her nieces and nephews. “She was always helping someone,” Evelyn said, “whether it was family or a stranger.” Her kids inherited this same spirit of generosity. Her remaining son, Edgar, has also fostered several children and adopted three.

At Adele’s funeral, the rabbi called Carmen a Lamed Vavnik, one of the righteous 36 who walk among us, making the world a better and more beautiful place. By definition, Lamed Vavniks don’t seek recognition for their good deeds. They do their work quietly, unfussily, because it ought to be done. But the life of Carmen Ayala deserves to be celebrated, just as my aunt’s deserved to be celebrated. And her name, like my aunt’s, should be known.