In 1997, James Atlas, a biographer and regular contributor to the New Yorker, wrote in that magazine about his growing dread of what to do about his aging parents. When they greet him at the door after a long flight from California, well-dressed and bearing gifts—still in decent shape—he has “a fugitive premonition.” “This can’t last forever. It can’t even last very long,” he thinks. Sooner or later, his father will have another stroke or his mother’s fibrillations will escape control; someone will have to step in to care for them. With their fragile independence, his parents are “always on my mind”; “I worry about them the way one worries about one’s children.” And though “at first, I am reluctant to bore my friends with these anxieties,” as he begins to air and explore his concerns, he discovers he’s not the only one. Everyone has a story of a relative with dementia getting lost on their way home from the supermarket or of putting a parent in assisted living and nearly fainting at the bill (or taking out a second mortgage).
Atlas’s essay is called “The Sandwich Generation,” a term that has become common, used today by organizations like AARP and Caring Across Generations to refer to the “gray tsunami” of the coming decades, when middle-aged folks will become “the sandwich caregivers,” stuck between aging parents and not-yet-launched children. Although these advocacy groups ring an alarm of urgency when they use the term—the Boomers are aging, and there are millions of them!—Atlas’s article reminds us that this phenomenon is anything but new. The tsunami has been here, it seems, for at least 25 years.
And yet, as a culture, in spite of the fact that, as of 2020, some 53 million Americans consider themselves caregivers to a family member, we continue to have a fairly paltry understanding of what it looks like to care for one’s aging parents. As Atlas indicates, there’s something unseemly or even boring about this element of life: the logistics, the finances, not to mention the aging body and its diminishments and then, ultimately, loss and grief. While Covid opened the door to more discussion about caregivers—the pressure on unpaid ones, the growing lack of paid ones—no one wants to talk about it, even if it consumes those of us it affects. Which it does. Mary Pipher, a psychologist and author, writes in Another Country: Navigating the Emotional Terrain of Our Elders, a compendium of her clients’ experiences of caring for aging parents, about the last year of her own mother’s life, 11 out of 12 months of which were spent in the hospital: “That whole year I felt isolated and alienated.… When I talked about the complexity of Mother’s situation, it overwhelmed me and bored others.” As Roz Chast titled her own graphic memoir on her experience of caring for her elderly parents, Can’t We Talk About Something More Pleasant?
Still, for all its taboo, the problems of caregiving are not uncommon; they recur, generation after generation. Alongside supportive, doorstop-size guides like The 36-Hour Day and How to Care for Aging Parents is a growing list of memoirs that address the draining, sad, and unsupported experience of taking care of a family member in decline. Everyone brings their own perspective to the genre: Pipher, in Another Country, offers the breadth of anecdata and wisdom of her psychology practice and the perspective of her Boomer generation; Jane Gross, in A Bittersweet Season: Caring for Our Aging Parents and Ourselves, a journalist’s attention to compact storytelling and actionable takeaways. Chast’s Can’t We Talk About Something More Pleasant? bears the author’s signature frantic squiggles and unfettered anxiety; it is also the most unsparing of the bunch, giving us a full play-by-play of financial decisions and inner turmoil until her parents’ final moments, disappointing attempts at reconciliation and (literal) open wounds notwithstanding. Others are here for the portraiture, none more so than Philip Roth in Patrimony, an account of the author’s years shepherding his 86-year-old father through the aftermath of a brain tumor diagnosis that is really a study of his father’s history and personality.
A recent addition to the genre comes from Lynne Tillman, a sui generis author of “authentically weird and indescribable” essays, novels, and short stories who is an admired figure in the New York arts and literary scene. Mothercare: On Obligation, Love, Death, and Ambivalence is a book-length essay about the experience of caring for her intelligent, frustrated, withholding, competitive, sometimes cruel mother who, at 86, is suddenly and mysteriously changed and utterly dependent. Tillman’s assertive mother, someone who “expressed anger frequently,” is suddenly subdued and confused; a woman who once dumped out the teenage Tillman’s dresser drawers when they were too messy is now unkempt. “Out of the blue, Mother was desperately sick, and it happened to our entire, small family. Each day, in the beginning, the first year or two, seemed urgent.” The ordeal, related in fragments, lasts 11 years.
How can an experience so common, one that can be so protracted and draining, both emotionally and financially, have such poor and limited solutions, and so often remain in the shadows? Tillman offers her story in part as a cautionary tale, in part as a variation on this familiar if nebulous tale. “My object: To tell a story that may be helpful, informative, consoling, or upsetting,” she writes. Above all, she wants anyone in this predicament to be given grace and compassion: “I want to say about this situation: It is impossible to get it completely right.”
Tillman isn’t the type of writer you might expect to take something so domestic, so personal, so logistical, as family caregiving for her subject, and she admits that writing Mothercare didn’t come naturally. “Exposing myself, Mother, a family’s inner workings, in this account, is strange to me, very uncomfortable, even disturbing,” she writes. Nor is Tillman’s style given to lucidity or grounded details. Known for her digressions, her loose and twisted syntax, her preoccupation with concepts rather than scenes, with the arcane and heady rather than the quotidian, Tillman isn’t inclined to specificity. I had the feeling, reading Mothercare, that Tillman was, to borrow a phrase she uses, “writing against” her tendencies: delving into a topic that was at odds with her instincts and predilections. Just as the role of caregiver was thrust on her, regardless of her suitability, so was the subject. Caregiving duties come even to the counterculture, and the experience is so overwhelming, so transforming, that Tillman, it seemed, felt compelled to explore her forced fixation at length.
The first part of the book is a version of what often comprises the first act in this genre: the medical mystery. Whence the sudden change in Mother’s affect, grooming, even handwriting? Given the sudden onset of their mother’s condition, Tillman and her two sisters, her mother’s newly anointed trio of caregivers, are suspicious of an early suggested diagnosis of Alzheimer’s. A trusted friend recommends a doctor who, against the odds, recognizes her mother’s ailment for what it is: normal pressure hydrocephalus, a condition caused by too much fluid accumulating in the skull and exerting pressure on the brain. NPH, as it’s known, causes memory loss and a strange gait and is often confused with dementia, but these symptoms can be reversed if the pressure is alleviated, usually through a surgically implanted shunt. “Diagnosis is everything,” Tillman writes, and this one “gave Mother a chance.” NPH is an underrecognized condition: “We were very, very fortunate.”
Still, it is a winding path and Tillman feels unprepared, as so many caregiver-memoirists do: “We sisters had to learn the hard way—many trials, many errors.” Tillman had never wanted a child, in part because she did not want to be “on call for another human being,” and she tolerated but did not particularly like her mother, someone who “had several illusions about herself, including that she was perfect” and who had not been particularly warm or nurturing to Tillman: “An irony not lost on me how was uncaring she was.” She does her duty to her mother out of obligation and conscience more than adoration; she feels pressure to be a good daughter and a good sister. “Some days I felt fine; some days I despaired of my superactive superego,” she writes. She wonders if she should put her mother in a nursing home or assisted living facility but knows how much her mother would hate it. So she persists, brimming with resentment. “About Mother, I never felt guilty. Anything I gave her was more than she deserved. That sounds awful. I wanted to behave as I wished she had toward me.”
The initial emergent nature of her mother’s condition subsides, but the need for care does not. The medical problem, though named, isn’t resolved, and Tillman’s story continues as doctors do their jobs with varying degrees of attention, humility (or its opposite), and efficacy. Tillman reflects on the arrogant guesswork of medicine, on being a loved one’s advocate, on how hard it is to build a reliable bench of helpers. Tillman lives in the same city as her mother and one of her sisters, but the rearrangement of lives and routines is still painful, ongoing: “Mother hovered over me and my sisters like a stationary drone. It became after a while, five years maybe, my irregular, regular life.” Tillman, who, as a writer, makes her own schedule, is often the one on call in an emergency or when her mother needs a prescription filled. She strives to establish a routine, limits and boundaries, and a set of expectations, “but limits and boundaries are erased and erected and erased again. There is nothing stable when dealing with a parent or friend whose condition is essentially unstable. Still, I looked for that, a steady state.” Ultimately, “Keeping her alive was done generously, but not selflessly, and also as a grueling obligation. Those eleven years were frustrating, an education, oddly enlightening, let’s say, they were morbidly enlightened. Those years were maddening and depressing. And I learned what I never wanted to know.”
As the book progresses and the Tillman family settles into whatever routine is possible in the circumstances, Tillman’s reflections become more circular, mimicking, perhaps, her own experience: “Days and nights dull and anxious, my life, like an oxymoron, was disturbed by emergencies, eruptions, and thudding repetitions.” In an emotionally flattened, repetitive style, Tillman alternates between resignation, frustration, resentment, regret, feeling bored to tears, fed up: “Prosaically, I was dying on the vine, imprisoned. Immature or silly or useless feelings, and nothing to do about any of it.” The few brief scenes that punctuate these aphoristic reflections are lightly sketched. Instead of texture, there are themes. She boils down much of her distress into passages like the following: “Awful, regrettable, weird incidents and events accumulated, too many to recall. Some, many probably, are repressed. The bad times presented new kinds of stress, and too much happened too fast to recall most of it in detail.” As understandable as it may be to repress or forget painful moments experienced under strain, it is the task of the memoirist to at least try to unearth the particulars. Ultimately, with all its elisions and gaps, its gnomic reflections, the book feels like it never overcomes Tillman’s ambivalence about the topic. Which isn’t to say her circumstances don’t elicit sympathy; her burden, all the more distressing given her relationship to her mother, is immense.
Tillman dedicates her book to caregivers, both paid and unpaid, and a sizable portion of the book is devoted to the Tillman family’s uneasy reliance on paid caregivers to manage the day-to-day of her mother’s care. This is one of Mothercare’s more refreshing aspects, given this issue’s relative neglect in other memoirs about caregiving. (It’s also another reason we may not get the particulars of the experience: Someone else did the cooking, cleaning, bathing, and minding, except on weekends, when Tillman’s sisters rotated responsibilities; these weekends, according to Tillman, were a depressing soporific.) Tillman and her sisters had the resources to pay for live-in help during the week, and Tillman reflects repeatedly and often on the fraught, unequal relationship of a white family hiring a woman of color, usually someone who is undocumented, at minimum wage to do the work they felt compelled to provide but did not themselves want to perform.
“When I could think clearly, when there wasn’t an emergency, this was an ethical problem that wouldn’t go away,” Tillman writes. She feels “conscious of it, but didn’t forsake my privilege. I could have done that by living with Mother, changing my life for her. Even though I knew it was a way to resist that history, I couldn’t, I couldn’t live with her, just couldn’t. I would have thrown myself out of one of the many windows in her apartment high up on the twenty-fourth floor.” She concludes: “Guilt was irrelevant, and self-serving.”
Tillman never got used to the arrangements, never knew exactly how to manage them. She relates many of the ways having someone live with your family but still be an employee led to uncomfortable situations, moral quandaries, anger on both sides. Overall, Tillman sought to compensate these caregivers fairly, usually through gifts and bonuses, and to give them “as wide a berth as I could. I wanted them to care for her, I wanted to trust them. I didn’t know any better than to trust them … and was selfish also.” She wanted to be able to leave, to write, to breathe air that wasn’t her mother’s. And so she forgave or ignored erratic behavior (throwing away perfectly good silverware), uncaring behavior (arguing with her mother, even though arguing with someone with brain damage or dementia “is futile and a problem in itself”), exploitative behavior (racking up a large phone bill and expecting the Tillmans to pay, stealing groceries). She simply needed the caregivers too much to hold out for a perfect arrangement or to disrupt a relationship in which her mother felt safe and trusting, a relationship that was the sole bulwark against the collapse of her own life and routines. (Here, too, Tillman recognizes the narrative possibilities—“The experience of hiring a caregiver, and a family’s coordinating, cooperating, with a ‘live-in’ companion, suggests material for a warped domestic novel”—but fails to fully inhabit or develop them.)
All of this enabled Tillman to pursue her career. She went to writers’ residencies, sometimes for months at a time; she taught weekly at SUNY Albany. She published her breakthrough work, American Genius: A Comedy, the year her mother died, and was awarded a Guggenheim Fellowship just weeks before. She had her sisters to consult with, rely on, split the bills with. In short, she was lucky, and she knows this.
Tillman’s obligations end with her mother’s death, and so, inevitably, this is where Mothercare leads. Tillman describes the end in detail: An infection takes her mother, now 98, to the hospital; as doctors attempt, on autopilot, to draw blood and treat the infection, Tillman and her sisters ferret out someone who names the comfort-focused care they desire: hospice. Tillman’s mother’s last days are spent at home, with the three sisters sitting vigil at her bedside; her body grows stiff and she stops speaking as Tillman waits for her to draw her last, rattling breath. “She was leaving slowly, and I watched with curiosity, detachment, relief, and disbelief”; “I observed it, her being undone in slow motion.”
The final pages expand into a meditation on death, not only Tillman’s mother’s but Tillman’s fears and feelings about her own: “Death terrified me, completely fascinated me, I was gripped by the awe-full sublime.” Rather than mourn or grieve her mother—“I was stunned with relief and deadened by exhaustion, inducing lightheadedness”—she undertakes a study of death, interviewing hospice workers for an essay she never publishes. She wants, she realizes later, to demystify death but recognizes it’s impossible. “I think I hoped to be released from great fear into benign fear, a certainty that death wouldn’t hurt me.”
Death was the irrevocable end that finally released Tillman from her obligations, but not without lingering regret and psychic costs. She continued to imagine that there were tasks she had forgotten, to expect a call requiring her to rush to her mother’s side. Shortly before she died, Tillman’s mother asked her daughter why they hadn’t put her in a home. When Tillman reminded her that she had forbidden them to, her mother responded, “That was stupid. You girls have spoiled me”—the kind of slap in the face Tillman had come to expect from her mother. Indeed, Tillman admits, “a time came when I regretted having been a good daughter and wished I hadn’t spent those eleven years on her.… I felt my sacrifice, if it was, was wasted on her. Now I have to let go of that.” The true sadness that lingers, she writes, was “what I can never have”: “a good or good-enough mother, a taste of unconditional Mother-Love.”
As Tillman expresses at the outset, each story of caregiving will be defined by the particulars: the medical conditions, the geography, the insurance, the budget, and the people involved, with their pasts and predispositions. Caring for her mother showed Tillman how much she herself had wanted to be cared for, how hard it is to share the burden with anyone else. “No consolation came from discussing Mothercare problems,” she writes, “and sympathy didn’t help me, it actually made me feel sorrier for myself.” Caring reveals, too, the threadbare nature of the support networks we have to cobble together when, predictably, inevitably, someone needs care; in this country, family obligations remain intensely personal. It is the reason, perhaps, why these common problems remains so uncommonly discussed.