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The Caregivers

A Support Group's Stories of Slow Loss, Courage, and Love

A gifted writer’s chronicle of the extraordinary bravery and strength of a group of people who care for loved ones during long, final illnesses.

A moving, intimate, and compassionate book that chronicles the experiences of a group of long-term caregivers and illuminates critical issues of old age, end-of-life care, medical reform, and social policy

In 2010, journalist Nell Lake began sitting in on the weekly meetings of a local hospital’s caregivers support group. Soon members invited her into their lives. For two years, she brought empathy, insight, and an eye for detail to understanding Penny, a fifty-year-old botanist caring for her aging mother; Daniel, a survivor of Nazi Germany who tends his ailing wife; William, whose wife suffers from Alzheimer’s; and others with whom all caregivers will identify.

Witnessing acts of devotion and frustration, lessons in patience and in letting go, Lake illuminates the intimate exchanges of caregiving and carereceiving. Her work considers important and timely social issues with humanity, warmth, and concern: How can we care for the aging, ill, and dying with skill and compassion, even as the costs and labors of care increase? How might the medical profession take into account the needs of caregivers as well as patients? Nell Lake understands that broad policy questions are experienced personally, in the daily, difficult but rewarding lives of caregivers everywhere. The Caregivers is a thoughtful and tenderly reported depiction of the real-life predicaments that evoke these crucial questions.

With more and more people spending their late years ill and frail, and 43 million Americans caring for family members over age fifty, The Caregivers is an important chronicle of a widely shared experience and a public concern. It offers a humane, realistic, and life-affirming portrait of what it means to give and receive love.

The Caregivers PROLOGUE
I remember my grandmother Hildegard—tall, slim-framed, her cardigan and shoes sensible but not quite grandmotherly. She was too stylish for that—wallabies, we called those shoes in the 1970s. In a modernist armchair in her study, listening to NPR, she puffed on a pipe—a pipe! My mother’s mother, Hildegard was elegant, German, unadorned, restrained. She had a wide face, high cheekbones, and a gently aquiline nose. I do not remember her embracing me ever; I don’t remember sitting in her lap. I do remember the chocolate chip cookies she baked me. She pulled a tin of them from her freezer, layers separated by sheets of wax paper. She held the opened box for me, and I chose one. Cold and hard, loaded with oats and butter, the cookie melted and sweetened in my mouth. She closed the tin.

She strode a mile every day to the center of Litchfield, her Connecticut town, past white clapboard houses with picket fences, and fetched her mail at the post office. She stood by the waste bin and sorted out junk mail. She opened appeals from Planned Parenthood and the Sierra Club and mailed off checks on the spot.

She had filled her big laundry room with supplies for her orderly, practical, and beautiful life: rakes and edge trimmers, bleach and soap, wooden drying racks, winter hats and gloves, seeds and pots. I remember my voice echoing against the walls. She scooped kibble from a drum to a dish she’d set on the concrete floor. Her leggy poodle, Justin, gobbled and wagged. She allowed no dust.

I smelled lavender in the sunny upstairs bathroom, and glycerin soap in a stainless steel dish, and the clean sodium of her tooth powder. My cousin and I, when we were ten, lived with her for a summer week. In my grandmother’s bedroom, my cousin and I did not jump on the single beds, covered in white, made up tightly. We cleared our dishes away after meals; we played on our own. On steamy days I dipped my hands into the ceramic birdbath my grandmother had placed below the rhododendrons. She’d cultivated native ground covers in the small woods behind the house and left much of the lawn long, in silver and green grasses. She’d had the gardener mow a winding path through the grass toward the vegetable garden in back, where she grew raspberries. My cousin and I ran down the swerving trail and plucked fruit. Our fingers smeared red juice on our cheeks.

•  •  •

My grandmother prized independence and physical vitality. During the time I knew her, she expressed aversion to growing old, particularly to ending up frail in a nursing home. She was uncomfortable with decline and vulnerability, her own and others’. She kept brochures from the Hemlock Society—the pioneering “death with dignity” organization—in a kitchen drawer.

At seventy-eight, in August of my nineteenth year, she learned from a doctor that pain she’d been feeling in her back could mean cancer. She needed tests. That same night, in the garage next to the immaculate laundry room, she turned on the car. The next day, an elderly neighbor discovered her.

•  •  •

It’s clear to me that, by committing suicide, my grandmother wanted to avoid being an invalid, dependent. It also seems clear that she didn’t want to be cared for. My parents and cousins and aunts and uncles reminded one another of this. Still, I’ve puzzled, since then, over her death. I’ve realized not only the ambiguities of my grandmother’s last act, but what she subsequently missed—what I missed: the intimacy that may come with tending and being tended to. The opportunity to love, to move toward even what frightens us. Perhaps she ducked out to evade the inevitable closeness, the letting go, the being known, the not knowing.

I know well her essential ethic; it has been passed down, in milder form, to me. A worthwhile life, according to my female forebears, is physically vital and wholesome—active, creative, replete with good cheer and fresh air. My mother, sister, and I savor our vegetable gardens and long hikes and thrown pottery and hand-knit mittens. We attend to homey detail, clear the clutter off counters, and fill our houses with color. We hang laundry on lines because wind and sunshine make the clothes smell best. The sight of white sheets on a bright June day, against blue sky and new green leaves, is good for the soul.

Such physical wholesomeness and beauty feel akin to dignity, grace. Hildegard lived this. She also greatly feared its shadow: the fading of the light, declining vigor, the decay, the messiness of illness and dying. What this meant fundamentally, I think, was that she feared losing control.

•  •  •

My grandmother’s conscious fear of the shadow part of life may not have been typical. But because I inherited a similar uneasiness with matters of illness and dying, it’s fitting, if perhaps not fated, that, twenty-five years after her suicide, I found myself, by happenstance at first, immersed in the lives of a group of people living in that shadow: the members of a support group for women and men tending family members with dementia and other chronic illnesses. In late 2009, I’d attended a birthday dinner for a friend and ended up seated next to one Benjamin Cooper. He told me he worked as a counselor at a local hospital, and that he facilitated a support group for family caregivers. I replied that I was a journalist interested in health, mental health, and medicine. Ben invited me to sit in on his group, as he thought their stories were important and illustrated challenges that more and more people face.

He asked the group members’ permissions, and they welcomed me. They knew similar groups were becoming more common. They seemed eager for recognition of their experiences and said they wanted me to listen, to witness. They said that their support group gave them the solace of intimate, relevant stories. They hoped, generously, that an account of their experiences would help others. Soon I accompanied them in their daily lives, becoming privy to inner and outer dramas—the setbacks, the near-deaths and deaths, the anger and perseverance.

It didn’t take long before my outlook widened, and my role as well: If I started as a distanced journalist, I became some hybrid—detached writer still, when I could manage it, but also friend and, sometimes, helper to the people I write about here. The shift was unavoidable from the time they welcomed me as a member of the group. I grew to care a great deal about my subjects. Along the way, I drew closer to what my grandmother had fled.

•  •  •

My focus was on the caregivers’ personal challenges. But as Ben had said, they were living out pressing public-health issues, questions our society needs to address: How will we respond to—and pay for—the fast-expanding need for elder care? How can we tend to the aging, ill, and dying with skill and compassion, while guarding the time, sanity, and finances of the family members who do the tending?

It is a modern conundrum. People used to die far more quickly. Medical advances have wrought a paradox: We’re surviving longer, but spending more of our late lives in drawn-out illness, dying protracted deaths. While life expectancy has increased, so too has chronic disease. The statistics show it clearly: More than a third of elderly men and a quarter of elderly women report having heart disease. Half of the old have high blood pressure, and a quarter have cancer. Many with chronic disease stay alive through interventions that did not exist even a few decades ago. More and more are becoming “old old,” spending their final years ill and/or frail and unable to care for themselves.

At least in part because of increased longevity, more people are developing dementia—a gradually progressive, incurable impairment of memory, reasoning, language, and personality, caused by one or more brain diseases such as Alzheimer’s. Dementia is a central and frightening specter of old age because it slowly diminishes personhood itself and devastates the relationships that personhood enables. With dementia care, children reverse roles with parents; spouses lose partners while they’re still around. More than 5 million people have Alzheimer’s, the most common form of dementia. By 2050, this number is likely to nearly triple. One in three elderly have Alzheimer’s or another form of dementia when he or she dies.

With this increase in chronic disease, more and more people depend each year on day-to-day care from family members and friends. The demand for unpaid, at-home care is accelerating as baby boomers age and the health care system is stretched thin. A few statistics here give a sense for the number of lives affected: According to the Family Caregiver Alliance, more than 43 million Americans—about 18 percent of adults—tend a family member or friend who is older than fifty. Dementia caregivers make up about a third of them. Informal caregivers are the largest source of long-term care in the United States, contributing labor worth nearly half a trillion dollars. Health scholars expect that by 2050, the demand for long-term care will nearly double, and family caregivers will continue to meet the greatest part of that need. Seventeen percent of employed Americans look after an elderly family member; a tenth of these caregivers quit their jobs to provide full-time care, losing potential health insurance benefits and, on average, more than $300,000 in lifetime wages, Social Security, and pension income.

Americans use the word caregiver to describe roles that are formal and informal, paid and unpaid. I write here about the latter type: people who give care out of love and/or a sense of obligation. Informal caregivers face fairly universal challenges: emotional and financial strain, physical stress and exhaustion. The particular caregivers I followed endured these difficulties and felt the strains. Caregivers in general experience greater stress and illness, and die at higher rates, than non-caregivers.

Penny, a central figure in this book, is statistically typical of such informal caregivers—a middle-aged, white, employed woman who spends about twenty hours a week caring directly for her mother. The members of the support group I followed weren’t, however, altogether demographically average. More of them were elderly, and more were tending spouses (as opposed to parents) than is typical. The group had relatively few caregivers who were parenting young children, likely because people in this situation have the least time for attending support groups. The caregivers were all white and obviously did not represent the racial diversity of this country. Finally, the group members were relatively stable financially—more secure than many Americans. But for them, as for virtually all caregivers, the financial costs of care caused strain.

•  •  •

Within the world that such statistics seek to describe, caregivers’ personal lives unfold. Sitting in on the group, I felt I was witnessing a sort of necessary, intimate, private heroism. The caregivers stood face-to-face with cruel decline, with hard choices, with no choices at all. Early on, while attending the meetings, I was moved by this. I also felt affronted. I found it difficult to stay open to their struggles—not just to their suffering, but to what seemed like a fundamental injustice: People we love can disassemble, can descend into oblivion without apparent reason. They suffer, and the people who love them suffer. Their vitality—and in the case of dementia, their essential selfhood—fades. Caregivers must tolerate, and persevere through, disintegration. The support-group members wrestled with a basic fact of our human condition: none of us and nothing lasts. In the bland conference room of a local hospital, ordinary people faced the inconvenient, heartbreaking, and inescapable truth that the body declines, that the mind can fade, that a person we thought was fixed, solid, stable—slowly, inexorably dissolves.

And by extension: we will cease, too—slowly, suddenly, or in some manner in between.

•  •  •

A few in my family held my grandmother’s death as a heroic tale of taking control of one’s fate, of refusing to be helpless. I can see it this way. But it seems mostly a sadder story: it represents, to me, the extreme of my own, my family’s, and our larger culture’s fear, even terror, of decline, illness, incapacity, dying. Such fear is natural. But the greater the aversion, the more acute the suffering, the less able we are to respond openly, wisely, to our own and others’ real lives.

I’ve come to see that wisdom happens in finding a balance between control and surrender. Sitting in with the support group, I witnessed both a wholesome desire to take charge and make things better, and a necessary acceptance of the stark truth that control, in the end, is elusive. In continually facing what came along—all the surprises, difficulties, and losses—the caregivers grew in wisdom. They also showed great and ordinary courage.
Photograph by Sarah Prall

Nell Lake, a journalist and magazine writer, was the founding editor of the Nieman Narrative Digest at the Nieman Foundation at Harvard University. She has written for The Boston GlobeYankeeHarvard Magazine, and other publications, and has reported for public radio. She lives with her family in western Massachusetts.

“A beautifully written account of a year in the life of caregivers...The Caregivers is as elegantly constructed as a novel, but more than that, Lake writes about these people with such warmth and vividness that they feel as memorable as our favorite fictional characters. In sharing these stories with readers, Lake has written a book that bears witness to their ‘necessary, intimate, private heroism.’”

– Kate Tuttle, The Boston Globe

“A penetrating glimpse into the modern world of caregiving…Lake shines as a storyteller…Her sympathetic portrayals are touching and thought-provoking, but Lake is at her best when examining the place and character of caregiving in today’s society….Those who are currently caregivers will find in Lake’s subjects understanding and compassion, just as they share with each other in the context of the support group.”

– Kirkus Reviews

“A chronicle of the extraordinary bravery and strength of a group of people who care for loved ones during long, final illnesses.”

– Publishers Weekly

“An elegantly written and thoughtful book that considers one of the biggest of the Big Questions we face as a society—how do we care for a ballooning aging population, with people living longer but with more health problems?—as well as the personal challenges of individuals who care for loved ones who are elderly or infirm.”

– Maureen Turner, Valley Advocate

“We are legion, we members of the middle-aged, mostly female caregiver corps, and we work our extra jobs behind the scenes. Since many of us can’t seem to summon up the energy to join that support group our friends keep suggesting to us, it’s quite canny of writer Nell Lake to provide one in book form…­­­Lake tells a good tale, and—just like an actual support group—provides comfort in the time-honored form of shared experience: Oh, You’ve been through that too.”

– Lynette Lamb, Minneapolis Star-Tribune

“An intimate portrait.”

– Susan Kaplan, New England Public Radio

“Lake offers views into the complexities of caregiving: the profound stress, the upheaval of family roles, the slow, often excruciating grief, as well as the graceful humanity of it all.”

– Rachel Zimmerman, WBUR’s CommonHealth blog

“This profound study on the effects of tending to ill loved ones offers powerful testimony to friendship and mutual support.”

– Publishers Weekly

"A moving and important book."

– Tracy Kidder, Pulitzer-Prizewinning author of The Soul of a New Machine and Co-author of Good Prose

“Virtually every one of us worries about an elderly family member who needs care, or knows we'll be responsible for someone in the future, or fears needing such care someday ourselves. Yet seldom does a fine and thoughtful writer address this subject. Nell Lake’s warm and compassionate book fills a gap, speaks to universal anxieties, and lets us know we are not alone. I hope it starts a national conversation.”

– Adam Hochschild, author of To End All Wars

The Caregivers offers companionship to those shouldering the sudden, complex, asymmetric, and protracted demands of caring for a family member in decline. Kind, and beautifully written, The Caregivers shares stories of lives overtaken by this common but often all-too-private, messy, and mandatory generosity. The book is not only a lucid examination of life's closing years, but a celebration of the solace and strength that come to many who accept this burden

– Mark Kramer, Writer in Residence, Boston University, and author of Invasive Procedures: A Year in the World of Two Surgeons

“Nell Lake has achieved a remarkable intimacy with the people she writes about, and she repays their trust with this refined and affecting book. In its sensitivity, compassion, and wisdom, it exemplifies the virtues it celebrates.”

– Richard Todd, author of The Thing Itself

"Nell Lake's chronicle of some ordinary people who do some extraordinary things is a perfect match of subject and writer. They are inspiring, and so is she."

– Daniel Okrent, author of Last Call: The Rise and Fall of Prohibition

"Nell Lake’s The Caregivers illuminates asubculture all too easily overlooked and undervalued: the men and women whotoil to ease the final days, weeks, and often years of loved ones who need helpnavigating everything from the simplest activities of daily living to thecomplexities of transportation, doctors, meds and endless paperwork. In prosethat is by turns elegiac, humorous, gritty, and intimate, Lake gives hersubjects the one response they so amply deserve and so rarely receive: a deepand abiding respect."

– Madeleine Blais, Pulitzer Prize winning journalist and author of Uphill Walkers: A Family Memoir and In These Girls, Hope is a Muscle