American Eldercide

American Eldercide

How It Happened, How to Prevent It

Margaret Morganroth Gullette

The University of Chicago Press

Chicago and London

The University of Chicago Press, Chicago 60637

The University of Chicago Press, Ltd., London

© 2024 by The University of Chicago

All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission, except in the case of brief quotations in critical articles and reviews. For more information, contact the University of Chicago Press, 1427 E. 60th St., Chicago, IL 60637.

Published 2024

Printed in the United States of America

33 32 31 30 29 28 27 26 25 24     1 2 3 4 5

ISBN-13: 978-0-226-82776-6 (cloth)

ISBN-13: 978-0-226-82777-3 (e-book)

DOI: https://doi.org/10.7208/chicago/9780226827773.001.0001

Library of Congress Cataloging-in-Publication Data

Names: Gullette, Margaret Morganroth, author.

Title: American eldercide : how it happened, how to prevent it / Margaret Morganroth Gullette.

Description: Chicago : The University of Chicago Press, 2024. | Includes bibliographical references and index.

Identifiers: LCCN 2024013168 | ISBN 9780226827766 (cloth) | ISBN 9780226827773 (ebook)

Subjects: LCSH: Older people—Institutional care—United States. | Discrimination in medical care—United States. | Age discrimination—United States. | Older people—Health and hygiene—United States. | COVID-19 Pandemic, 2020– | Aging—Social aspects—United States.

Classification: LCC RA997 .G85 2024 | DDC 362.1084/6—dc23/eng/20240410

LC record available at https://lccn.loc.gov/2024013168

This paper meets the requirements of ANSI/NISO Z39.48-1992 (Permanence of Paper).

Contents

Part 1  Inside

Dedication

Prologue: Those We Lost

1. Sweeping Up the Heart, the Morning after Death

Part 2  Instead

2. Instead . . . The First Months of 2020

3. How Americans Learned to Accept That the Old Would Die

4. A Chasm Opens: Vital Youth vs. Moribund Age

5. Consequences

6. On Futility and Miracles

7. The Before Time

Part 3  Ahead

8. The Guardians of Later Life

9. In Search of the Missing Voices

10. The COVID Monument We Need

Epilogue: Reckonings

Appendix: Undercounting the Deaths of Residents

Acknowledgments

Notes

Index

Part 1

Dedication

American Eldercide is dedicated first of all to the people in the nursing facilities who died of COVID. Those we lost should have been better protected before the pandemic, and then, when it struck, immediately made safe by those state powers that had the utmost responsibility to protect them: the president, the Department of Health and Human Services, the Centers for Medicaid and Medicare, Congress, and the fifty states. Instead . . .

Where the residents were concerned, instead is the keyword of the new COVID Era. Instead, they were often forgotten and exposed. Discarded as if they were expendable. Dependent on authorities who seemed distant or witless. Unable to get away to greater safety. Often dying alone. All across the country, if an aide held an older person’s hand and spoke words of love from family members or friends whom the dying person could not be with or even see, that was the best death available.

Tens of thousands of older adults and disabled people died in miserable circumstances, unnecessarily. More of them could have been saved—and in some places they were saved, to survive the pandemic, savor longed-for reunions, and await the next normal. Now is the time to show that the humiliating and lethal governmental abandonment of these people amounted to eldercide, and to explain how this unimaginable outcome could ever have happened, in a rich democracy, to the most vulnerable among us.

This book is fueled by anger at the injustice done to people living in nursing facilities, abandoned by our government in the hour of their greatest need. Indignation, when describing grievances and calls for a fairer world, feels useful.

Useful was my mother’s favorite word of praise for ideas and actions. I want everyone to have what they themselves would consider a comfortable old age, as my mother did. After having worked for decades as a unionized teacher, in her early nineties she was able to move near us, into an assisted-living place she chose herself. In 2010, thankfully before the epidemic, she was able to die in her own bed, accompanied by people who adored her. I needed to call on the memory of her lifelong strength to face the suffering revealed by COVID and to uncover the full disgrace of systemic ageism.

When compassion is a passion, it may lead to social justice. Emmanuel Levinas, the philosopher, writes, The face [we see] is the other who asks me not to let him die alone, as if to do so were to become an accomplice in his death. The story I tell aims to make readers feel as if the nation had neglected their own mothers and fathers . . . as if their own hearts would be squeezed in pain until they reach out to make amends and make sure that we never lose such precious ones prematurely again. Never again.

Prologue

Those We Lost

To those who grieve for loved ones lost in such unbearable conditions, the pain goes beyond words. Chris Kocher, who started a weekly support group for the bereaved, must be right when he says, I guarantee you they are thinking about this every single day. To all of us lucky enough to still have older people in our lives, they comfort us by their presence. Repositories of family lore and legend, they dole out secrets and, for better or for worse, guide us by their experiences. We so much need our elders to be kind that we imagine they must be. Sweet (often paired with incompetent) is one of the common epithets for older adults. Often, sometimes, rarely, never—younger people judge—elders manage to meet their judges’ complex needs. Psychically, whatever their individual characters, those older than we are stand between us and our own mortality. With so many elders gone, however, we have lost that thick blanket of shelter. Perhaps when we complain of anxiety or isolation, as so many now do, those feelings arise because we feel more naked against the tornado winds of futurity. Having an elder die is like watching an entire library burn down, lamented a young tribal American woman, Virginia Hedrick.

By 2023, over one million Americans had died of COVID. Several groups suffered disproportionately, especially minoritized and otherwise marginalized groups. But one particular group gained a historic significance that no one would wish on their enemies. In 2019, the US government had provided congregate homes to 1.4 million people who needed care. These people should have been "the object not just of governance, but of good governance, a symbol . . . and indicator of a caring society and of national coherence and inclusiveness." Residents of those facilities were the first to die, and they began to die in alarmingly high, then seemingly unstoppable, numbers.

As of May 28, 2020, twenty-six states found that 50 percent or more of their COVID-19 deaths had occurred among these residents, who had been locked down in government-supervised care facilities. In what follows, the term residents refers to this group.

It is well known that the condition of convicted people in state and federal prisons was atrocious. Before the end of the first year, out of 1,215,800 prisoners, 1,700 had died. The residents’ plight was far worse. The death total for nursing-home residents (as of the week ending on January 17, 2021), out of around 1,400,000, was at least 112,300, many times more. And that number is known to be a severe undercount. The government stopped counting during the first deadly months and thus made all true counts of the 2020 COVID toll uncertain.

The residents had constituted only 0.42 percent of all US inhabitants, a number small enough and localized enough for them to have been properly protected. A director of geriatrics in a resource-rich NYC hospital challenged experts to cite another pandemic in which a majority of cases are so profoundly concentrated to one patient population and place. Nursing-facility reformers had anticipated that whenever this segment of public health was confronted by a new biological threat, the disaster would be due not to the residents’ physical vulnerability but to the well-known, ongoing failures of the system. No one wants to be right about such dreadful prognostications. Reformers were distraught, frustrated, and helpless.

To say that it was just severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), a.k.a. COVID-19, that killed tens of thousands of residents and left their families bereft is to miss an important sociopolitical and ethical point. The US government was responsible for these people—for their housing, food, and health and welfare, and for their lives. Indeed, they are the only group that is in a position to make a strong claim on the government, as long as the US continues to have no universal national health care system. Protecting these residents is—was, has long been, and will remain—a legal and a moral responsibility.

When a highly contagious and potentially deadly disease strikes so special a group, the only sensible, humane response is to rush resources to them. Saving them would have been doable: There were only 1.4 million of them. They could have been wholly separated from contagion, like those privileged enough to afford to hunker down at home. Indeed, some facilities were fully protected. Even in 2020, a small percentage of nursing homes suffered no deaths.

Instead, the system at top government levels catastrophically failed most of them. In The Value We Place on Life, Howard Steven Friedman stated a sad truth: Undervalued lives are left underprotected and more exposed to risks than more highly valued lives. . . . the young more than the old, the rich more than the poor, whites more than blacks, Americans more than foreigners, and relatives more than strangers. The residents—undervalued lives—were under-protected.

Among the millions of grieving families and friends, some suspect the truth this book will show. It was Eldercide. Indifference, rooted in preexisting ageism, killed the victims before their time. They all had more life to live, more love to give. The government’s failure to protect them should strike fear in the hearts of everyone who hopes to grow old. Many of us already worry about finding ourselves, with some bodily weakness and too few resources, captive to a market-driven system that traps some older, disabled, and sick people in inadequate institutions.

For reasons that will become clear, the Eldercide in the nursing facilities did not cause outrage. The public should also have been amazed, as well as grieved, that so high a proportion of the million-plus COVID dead were older adults. My hope is that we can understand how and why this Eldercide happened and finally forge policies to prevent the next such public health catastrophe. With knowledge and goodwill, the US can achieve a profound alteration in consciousness: restoring the image of all older adults as human beings who have precious lifetimes ahead of us and an equal right to live. To emphasize why all old lives matter, I focus first on the residents.

Across the Threshold, 2019

Across more than 15,400 nursing facilities in 2019, the residents looked like America.

They represented all genders and sexualities, races and ethnicities, national and cultural backgrounds, religions, political persuasions, physical and intellectual abilities, temperaments, tastes in music, vocal tones, and life narratives. No two baby photos were alike! Only, among other Americans, by this time of their lives, they had experienced more hardships. Simone Weil, the French philosopher and activist, was viscerally attuned to how the maligned suffer from being maligned. She turned to the tragic characters of Aeschylus and Sophocles in order to find portrayals in which a shamed spirit . . . is neither disguised, nor enveloped in facile pity, nor held up to scorn; here more than one spirit bruised and degraded by misfortune is offered for our admiration.

The residents accrued diverse experiences over the decades and became more individual as they grew older, as one does. They had witnessed firsthand and endured a long span of national history. A few had lived through the pandemic of 1918–1919. More had suffered the Great Depression. World War II. The internment camps. McCarthyism. 1968. Vietnam. The civil rights movements. 9/11. The Long Recession of 2008. In one week early in 2021, Elliot Kukla, a rabbi in San Francisco, said goodbye to five clients who died of Covid-19 in nursing homes: one Holocaust survivor, two who survived the repressions of the former Soviet Union, one who always greeted me with a clipping about transgender rights issues (because she knew I was trans and might be interested) and one whom no one really knew.

The residents belied most common stereotypes. To start with, they were not all women. Almost a third were men, according to the National Center for Health Statistics. Immigrants held parts of two or more cultures in their heads, and two or more languages. They were diverse racially and ethnically, although most were white. At this stage of impoverishment, whiteness confers no exemption. Six percent were Latinx, 12 percent were Black. (In 2016, 12 percent of the centenarians were African American.)

Once you are inside, you see faces that recall noble artworks. (Like my father in his sixties, who had the fine profile of Giovanni Bellini’s Doge Loredan.) One of Käthe Kollwitz’s later self-portraits, with chiseled nose and fierce determination. A dapper mustachioed man straight out of Gordon Parks’s portfolio. A man who is the spit of Lucian Freud in later life, looking stern. A head bowed by osteoporosis lifts to look you in the eye and turns into a friend of Alice Neel’s as she relays gossip about the woman at the next table.

Age is not the only thing to know about them. It’s not even the first. Residents covered a multi-decade spectrum of ages. Some were over one hundred. Around 16 percent of residents were younger than sixty-five, the so-called retirement age. ALS, Parkinson’s, multiple sclerosis, Alzheimer’s, diabetes, and heart disease—such maladies can all strike young.

Because of the stigmas of weakness, dependency, and dementia, and because walkers and wheelchairs are prominent in the public’s visual imaginary, it is good to remember the photographer Ponch Hawkes’s words: The best thing about [having] an older body is you’re still here; it’s got you through so much. Hawkes photographs people over fifty and thinks we’d mollify our hard age gaze by seeing more older people in images. All aging is ‘successful’—not just the sporty version, anti-ageist writer Ashton Applewhite declares in one of her enlightening epigrams. Otherwise you’re dead.

There is no single first identity among residents. Not even ill health. A good number as usual were recuperating—from surgeries or strokes. Some who needed assistance with Activities of Daily Life (ADLs) like toileting and bathing otherwise enjoyed sturdy health. In general, older adults tend to think their health is good or excellent, whatever their doctors’ charts say. Either they emphasize the positive—what I can still do—or they have a more holistic view of health. Some were bed-bound. Some required around-the-clock medical care, including replacing oxygen tubes, catheterization, and turning, because of physical limitations or paralysis. There were survivors of polio, environmental racism, stroke, amputation, cancers. For various reasons, many more residents now are multiply impaired.

Some had mental illnesses; their number, due in part to legally required deinstitutionalization, had been going down. About half were living within a broad spectrum of cognitive abilities, memory loss, or loss of some executive abilities. Only 4 percent suffered from delusions. People with partial losses still have a lot of selfhood left—telling stories, laughing at jokes, voting. At least a fifth of us—call us the outsiders—have some impairment. A full half of us have some cardiac disease, according to the American Heart Association, so this is the main illness residents arrive with. No ableist superiority is justified. In 2019 most residents rightly expected to live many years longer.

They remake their personal spaces on that assumption. Even if each person has only 90 feet square (the minimum that owners must provide in my state), the presence of a few precious possessions makes their area inside the building a bit more like a room of one’s own. On the wall of one ward-like room hang eleven photos of family members and a framed piece of ecru crocheting, laboriously tatted. In framed photos taken of them, most occupants are smiling, looking at people they like who took the image. Every object in a room—except the TV for watching the shows—enfolds a precious fragment of the occupants’ personality and history. Most prized pieces had to be left behind for lack of space. But here is a small flag. A crucifix. An open book and tortoiseshell bifocals. A Raggedy Anne in a patchwork dress. An award with a name in spidery calligraphy.

In the top drawer of a small bedside chest, securely wrapped: his Swiss Army knife, the expensive one with multiple functions, the last of his tools to go. Inside a grandmother’s woven bamboo sewing basket (Guangdong Province, 1880–1930), ornamented with red silk: small snipping scissors shaped like a crane. In a bottom drawer: a packet of the thinnest airmail letters, from Korea, via Army Post Office 246—with the one on top marked Return to Sender.

Before the lockdowns, some residents found ways to do what was important to them. Despite age and impairment, we don’t stop wanting pleasure of whatever sort. They played Scrabble, pinochle, five-card stud. Most bigger places had a space that could serve as a beauty parlor; people like to be as well-groomed as they were before. Some enjoyed the energetic shouting and groans on bingo days. (Don’t smile. A small win can make a desired purchase affordable.) A grandparent gave a child an exhilarating ride on her wheelchair.

Food was notoriously bad, but in some places aides spoke their language and kitchens made familiar food. Residents extolled and disputed the virtues of rösti, kugel, samosas, dumplings. Some married couples could live together in a room. People met and fell in love. Parties were held when couples retook their vows, sometimes after fifty or sixty years of marriage. If staff organized a dance, there was music, cake, and crowns for king and queen.

Most residents were single: divorced or widowed, never married or, if they were LGBTQI, long forbidden to marry. LGBTQI people over sixty-five have a higher rate of chronic illnesses. They are half as likely to have life partners or significant others, half as likely to have close relatives to call for help, and four times less likely to have children—they are thus more likely to find themselves in a facility if they need care. The PBS documentary Senior Prom gives that term fresh, woke meaning. The film celebrates the legacies of LGBTQI people, once cruelly excluded from their own proms, who went on to become trailblazers. At the prom showcased in the movie, held in Hollywood, California, an older man, smiling proudly, is crowned Queen. We’re visible now, and we’re going to keep on being visible, an activist firmly proclaims. In an enlightened culture, these words could become the proud motto of the entire world of residents.

Federal regulations mandate that appropriate activities be offered. Like much else that is mandated, including physical care, activities don’t occur if the operators skimp on hiring staff and don’t get caught. In better-run places, residents choose from a range of programs—just as my mother did. Art, music, or woodworking were offered to those in the better memory units. People with such impairments retain their personhood longer if they are not sent to Coventry—if others include them. In an insightful Chilean documentary called The Mole Agent, eighty-three-year-old Sergio is hired to pose as an inmate in order to monitor the treatment of an isolated woman. Over those few months, Sonia, who had been sleeping during the day and shunning physical contact, becomes talkative as she responds to Sergio’s attentiveness. Memory loss can produce or reveal extraordinary thoughts. Poets find them quotable. Some people write books about living with their cognitive losses.

Michael Bérubé, the father of a child with Down’s syndrome, suspect[s] that cognitive disability is the slowest-moving of the stigmas and will remain a subject of horror and avoidance for decades to come. Treat us with patience, not hostility, one patient woman with Alzheimer’s explained to a researcher who had asked what she most wanted from others.

Some new residents—maybe for the first time in their lives—sang in choruses, showed artwork, grew plants in raised beds. During lives of hard work, some had not had the leisure for such activities. Some had been movers and shakers when it counted in the movements of the fifties, sixties, and seventies. Many had been essential workers, which we now know means people no one sees, doing valuable work for less pay than they deserve. They had been teachers, stoop labor, firemen, house cleaners—you name it, like all those articulate people in Hard Times and Working whom Studs Terkel loved to interview.

The residents were loved. Being there, in those crowded rooms, often in a hospital-like setting, did not mean they had been abandoned. Being mistreated might simply signal that their loved ones outside were also helpless to alter the system. Before the lockdowns, many residents went out regularly with family or friends, who also came to visit. In the dining rooms, people sat at tables for four or six, with their vehicles—their walkers and wheelchairs—parked nearby. Some entertained the staff. Some volunteered, using skills and talents.

Margaret Ditto, a fine-featured young certified nursing assistant (I) working in Seattle, who wears a single long dark braid down to her waist, said I like talking to [residents] about their past, and what their marriages were like, and what their kids are up to as adults. I find a lot of comfort in that. (CNAs do 90 percent of the daily hands-on work that residents need, often work part-time in several jobs, and earn only a median annual income of under $30,000. Many, hired part-time, don’t qualify for paid time off or health insurance. Some are also providing unpaid care for family members. A disproportionate number are female, people of color, and immigrants.) Younger people who get close to congenial elders must be calmed by seeing so many versions of later life, rich with jokes, songs, anecdotes, griping, and opinion—the poetry and factuality of otherness. They must admire those elders’ ability to endure situations that cannot be avoided or made to come right.

Many permanent residents were well enough that they could have lived at home had they been able to afford to pay for help. In-home care is cheaper than residential care, but there’s long been a counterproductive paucity of government money for it. Running out of money is the curse.

Even if they had worked all their lives, 63 percent of residents were on Medicaid, a program for low-income people and people with disabilities. It is funded mainly by the federal government, which guarantees part of the states’ costs. But not all recipients started out as hardworking poor, long stuck in low-paying jobs. The well-enough-off can need skilled care—like Thomas, a minister whom we will come to know in the next chapter. Nor is it improvidence that drives people onto Medicaid. After about 1980, the US population grew steadily more unequal. Corporations chiseled employees out of their pensions. Middle ageism and outsourcing threw them out of work in their prime. Millions lost earnings that would have gone toward plumping up their Social Security benefits or laying down savings. Medical expenses pauperize many.

The economic slide has slammed many middle-class people. Having outspent their savings and assets and the short-term hospital stays paid by Medicare, they can find themselves in a facility they abhor. My mother’s dear friend Vera, whose painful story I tell later, was one of them. If any of the residents had been less able to work all their lives or to save despite working hard, all the more reason to cherish and protect them from powerlessness. If the 1.4 million people in nursing facilities shared any single commonality, it was powerlessness.

Although in this book I call all of them residents, about a third of this group at any time come for rehab, temporarily. Transients may arrive in casts or in recovery—from a stroke, joint replacements, or a prostate or cancer operation. They come for skilled nursing care, training in symptom management, or physiotherapy. They expect skilled, respectful care. In a home with adequate staffing they would get it, but adequate staffing is rare. In one small New Hampshire nonprofit, however, Ms. M. moved in thinking it would be for life. She left forty-six days later, having lost more than twenty pounds with the help of a dietitian, her diabetes kept in check with oral medications. Her leg wounds were fully healed.

Most residents come permanently. Moving into congregate housing—nursing and veteran’s homes, rest homes, assisted living, or continuing-care retirement communities (CCRCs)—is not a sign of being near the end of life. It’s a new domestic setting in which to lead one’s life. Assisted living is expensive; few such businesses accept Medicaid. People whose families adore them but cannot manage their intensive care, and people who cannot afford to hire aides, may qualify for nursing facilities. People with preexisting conditions or cognitive or physical disabilities are not ipso facto suffering. They may enjoy—one chooses the word enjoy deliberately—long lives. Most of the COVID dead would have. They were looking forward to visits, weddings, births, the sun rising.

Louise Aronson, author of the widely read book Elderhood, a geriatrician who loves to visit with her clients and give hugs, calls greater contentment a widespread fact, one of the psychosocial joys of growing older. Even when it doesn’t follow a shocking disruption, however, making one Big Move in later life is heroic. The exchange is bound up with loss of community, status, and familiar objects. Discarding the stuff!—as gerontologist David Ekerdt calls it—is part of the ordeal: deciding what furniture and clothes and photo albums to leave behind, never to be seen again. The gathered possessions are a public sign of one’s continuous identity. Most facilities require people to leave their pets, an added trauma. Instead, the sad newcomer may find pet therapy, visits from pets, or robotic toys.

In any life, the Big Move may mark a grave loss of mobility, health, friends, a community, independence, or all of these at once. Moving into a feared place can feel like a wound. Doing so requires whatever people have accrued of ingenuity, patience, charm, resilience. Adjusting may take as much heroism as arriving in a foreign country with $16 in your pocket, as my immigrant grandfather did at age twenty in 1901.

After enduring such shocks, many try to recreate their normal, non-pathologized identities. It can take great effort to overcome the grief, anger, or depression at their own bodies or minds or incomes, or, sometimes, indeed, family, for failing them. Back of mind can be the possibility of losing more. People with moderate cognitive impairment may fear being seen to wander and then having to remove from their familiar room, however cramped, to a secure ward. Anxiety about this strange place can be exponentially greater than in any earlier move. Therapy, a plausible solution for anxiety or depression, is often unavailable.

But admission to a nursing facility can also be greeted with a long-pent-up sigh of relief. Some must be glad they are not homeless, as too many people over fifty find themselves. People whose rent was too high to buy medications, or who were subject to eviction, may find themselves grateful that the rent is paid. Some facilities, however, force those they consider problems to leave. John Oliver, in an outraged diatribe on Last Week Tonight, calls this practice resident dumping. People who need specialty care—for cognitive impairments, AIDS, dialysis, head trauma, Huntington’s, a ventilator, or hospice—may find a nursing facility essential. People abused by family members—beaten, raped, cheated out of their Social Security checks—are that much safer. It’s a tremendous luxury—for women with huge family responsibilities, especially women of color, or widowers who never learned to do for themselves—to receive regular meals they don’t have to cook, and to have someone else drag the vacuum under the bed.

Residents of nursing facilities often need to undo an aversion uncomfortably common among outsiders: their own, to being the self locked into that diminished situation. Having lived so long as community dwellers, they have imbibed the same remorseless stereotypes circulating about inhabitants of nursing homes—as soiled, degraded, abjected, and close to death. Inside, the carefully constructed social gradients and stigmas of outside still inhere. Residents may feel inferior and shamed instead of understanding inferiorization, the infliction of a lower, demeaning status. Audre Lorde saw that in a society where the good is defined in terms of profit rather than in terms of human need, a group of people, through systematized oppression, can be made to feel surplus, to occupy the place of the dehumanized inferior. It’s common enough to seem like mere common sense.

In one rare study of the desires of hospitalized older adults, 26 percent said they were either very willing or somewhat willing to move to a nursing home; but 30 percent said they would rather die. (This wording was the only option provided for disagreement.) If they find themselves in an institution they believed despicable in advance, the stigma doesn’t necessarily weaken. They may have trouble making friends because ageist slurs make the doors of clear perception as opaque as clouded glass.

Others find genuine, humane ways to surmount the constraints—like Lou and Joe, quoted in a lively book by Tracy Kidder about two accidental nursing-home roommates, Old Friends. John Leland, a journalist who interviewed people over eighty-five, sums up their achievement. Everyone has had to find satisfactions that were still accessible—to make lives of what they had, not what was taken away. The elders have been living in this terrain for a long time. We outsiders, having lived through the deprivations of the COVID Era, not always in good humor, may now admire such abilities more than we used to. 2019 was the Before Time.

Instead

Everyone, once inside, should be able to rely on a basic level of courteous attention: living nicely, with pleasant assistance if assistance is needed, nourishing and edible meals, exercise classes, access to the outdoors, clean rooms, and common spaces to entertain guests. Two advocates of reform say, rightly, that "the provision of care and service to residents, who are arguably the key constituents of the institution, is the entire raison d’être of LTC [long-term care] facilities."

However, the fact is that the government had entrusted residents’ lives and comfort to a private money-making industry valued at over $141 billion. If government-monitored housing were guaranteed to be comfortable as well as safe and permanent, these locations could be desirable locations to age in place. Some are. The rest must now be made good enough so that the public officials responsible for elevating standards of care and imposing stiffer penalties on the industry for its COVID Era failures, could imagine their own parents or siblings—or themselves—living there.

Instead, the risk of dying was greatest precisely for those who needed assistance and chose or required congregate living in which to get it. After January 2020, most of those diverse individuals found themselves living in dangerously understaffed and under-equipped lodgings, often thought of, as we’ll see in detail later, as tinderboxes at the start of a perfect storm or wildfire. When the virus precautions ended all communal meals and activities, many were imprisoned in a room with another occupant or two or more. Pre-COVID, the worst case might have been that another occupant snored, screamed, or supported an odious political candidate. After March 2020, a roommate or an employee could pass you the deadly virus. The residents who had had little in common in 2019 except powerlessness were suddenly united by their risk of infection and a justified new fear of dying.

A Deeper Assertion of Life

Harold Furness, a World War II veteran called the Colonel, is one of six survivors who turned one hundred at a home in Pennsylvania in 2021. You think, ‘Oh, I wouldn’t want to live that long,’ but every day is precious, he said. Before COVID, the residents had certainly expected to go on living. It’s human to have such expectations—however old one is. Absent a life-threatening illness, older people do not think about death more than younger ones, and they seem more calm about it.

(Living long had certainly been my expectation in 2019: I was only in my late seventies, healthy and of strong stock. My grandfather, like my mother, had died at ninety-six. But COVID’s global lethality undermined any complacency. After flying back from a huge conference where people had been too eager to hug the main speaker [me], I started sheltering at home. My husband and I wore rubber gloves to open the mail, paid a neighbor’s son to shop, washed the food packaging. We kept sanitizer in the car, inside the hall, in the kitchen. We wore carpenter’s masks—all we had at first—in public. Those were the known guidelines. We followed them strictly.)

Many residents felt they had a lot to live for. Ginny Dockweiler, living in LaCrosse, Wisconsin, said, after getting her first vaccine shot, I figured I may be 86 but I have a few more years to live, and I want them to be healthy. When her granddaughter Tia was finally able to visit after a year’s absence, they exchanged a long-awaited close hug, and at the same time, both said, I love you. Ginny said wonderingly, O, tears in the eyes?

Billie Jean, an eighty-three-year-old in Charlotte, North Carolina, knew what she wanted: cooking, visiting grandchildren. I definitely don’t want the virus. You have the potential to die and nobody wants to do that. Pre-COVID, the idea that older adults living in facilities held assertively to life, like younger people, was blotted out of social consciousness by hearing so much about dependency, sickness, loss of abilities. In 2022, Dr. Jasmine Travers, a professor testifying to a Select Subcommittee on the Coronavirus Crisis, felt she had to rebut the alienating stereotype. I urge the subcommittee to recognize that older adults do not want to stop living, although they may need help living.

People aging-toward-old-age need to hear that now—after the storms of mortality data and horrifying narratives of abandonment and abuse behind those locked doors. Although the whole life course from childhood on, Milan Kundera once wrote, is a planet of inexperience, in the earlier parts we develop expectations by learning in advance about parenting or adultery or being an astronaut, through the storytelling of others. Among the true unknowns—Whom will I find to love me? Can I get a better job?—people seem unable to estimate in advance how long they will want to live in old