DO NOT MISTAKE Lynne Tillman’s Mothercare: On Obligation, Love, Death, and Ambivalence for a memoir. While it is unflinching, this book isn’t primarily about the vexed origins or aftereffects of the fraught mother-daughter relationship it describes (although all of that is in here). Rather, it is about performing the duty of keeping a person safe in an age when medicine often prolongs our lives long past our capacities. In this sense, Mothercare is more of an essay, or a dispatch: reportage from the trenches of care work. The “great difficulty” of writing, Elizabeth Hardwick once noted, “is making a point, making a difference—with words.” Tillman has no challenges on this score: her book offers an unsparing account of the American health-care system and a starkly unsentimental portrait of the mechanics of looking after a person who is dying very slowly. Drawing on skills she’s honed as a novelist and cultural critic, she crafts an account at once formally restrained and emotionally weighty. The result is a distinctive and, in Hardwick’s terms, useful demolition of the sentimentally larded stories our culture tends to tell about families and illness.
Care work has historically been performed mostly by women: mothers, daughters, sisters, whose ministrations have long gone unpaid and undervalued by society. So it is in Mothercare. Tillman and her two sisters—“the New York sister” and “the Carolina sister,” as she calls them—care for their mother for eleven “grueling” years, from 1994 on, as her health declines. “Keeping her alive was done generously, but not selflessly,” Tillman reflects. Born Sophie Merrill in 1908 on the Lower East Side and married after a seven-year courtship, her mother spent most of her life in the suburbs of Long Island and in Florida. Mother, Tillman tells us—and she is called “Mother” throughout—was “smart, resourceful, attractive, tactless, competitive.” She “had wanted to write and paint, but instead she married and had children”; it was the 1950s, after all, and Tillman’s father made enough money that her mother was expected to assume the vaunted role of homemaker. And so a thwarted bitterness shone through in her parenting. In her late seventies, following the death of her husband, Sophie returned to her hometown New York City, where for “seven and a half good years as an independent character” she attended “movies at MoMA, saw plays, and walked everywhere.” And then Tillman returns from a semester in England and, when she meets her then-eighty-six-year-old mother for lunch, finds her “disheveled” and strangely quiet. The sisters take her to a doctor, then another. The diagnoses accumulate: one doctor thinks the problem is Alzheimer’s; another thinks it is not. Finally, a doctor proposes that what ails Tillman’s mother is “a condition called normal pressure hydrocephalus,” characterized by too much fluid on her brain. Its primary symptoms are “urinary incontinence, dementia, and gait deviations.”
And so the care work ensues. Mothercare—a brilliant neologism—is draining financially and energetically. For eleven years, Tillman visited or was “on call” to her mother “almost every day.” She and her sisters are plunged into a seemingly endless and confusing journey through the American health-care system. “The pressure could be alleviated with a shunt,” Dr. A. explains, and so a shunt is put in. But nothing is straightforward: the shunt doesn’t work, exactly, the doctors disagree, one condescends to the family, and the sisters are plunged into the all-too-familiar terrain of strained communication with doctors that so many of us find ourselves traversing: an arrogant neurologist, Dr. Z., clearly thinks that her children “weren’t accepting reality, the sad truth of Alzheimer’s.” Convinced of his authority, he fails to listen to them and fails to treat their mother adequately. Tillman bitingly conveys the frustrations and powerlessness of what is now called “medical gaslighting,” noting how much it spills over into family life: “Dr Z.’s negativity affected me, though I thought he was wrong.” Still, she writes, “I found it perplexing, hard not to wonder if he were right.” Indeed, a visit with a later doctor suggests that the shunt wasn’t working correctly, causing their mother unnecessary suffering, leading to potentially irreversible brain damage, all while a simple test Dr. Z. fails to administer or even mention—the astonishingly named “shuntogram”—could have revealed crucial information.
With economy and lacerating brio, Tillman makes you feel the family’s despair and frustration, and captures the messy reality of medical care: it becomes clear that her mother’s shunt must undergo a “revision”—in which the shunt’s tube is shortened or replaced—not once, but multiple times. The word “revision” haunts the book. Although Tillman doesn’t editorialize, she leads the reader to muse: Is the revision needed here one that goes beyond the more placement of a shunt? Could her mother’s story have turned out differently—better—with revisions? The kind a fiction writer can make, but the nonfiction writer, bearing witness to reality, alas cannot?
The core of the book is Tillman’s skillful portrait of the unsentimental reality of motherhood—a reality that is harder to revise. A mother can resent her children, and a child can resent her mother. “From the age of six, I had disliked my mother,” Tillman writes. Even as Tillman does not wish she would die, their negative relationship impacts her desire to care for her mother: “My possibilities and fantasies were being stolen by Mother, whom I didn’t love.” In fact, many adult people, many of them women, do not find meaning and reward in care work, even when the relationship at hand is a good one. Care work also prevents you from doing your own work, as Tillman vividly evokes.
And so these days, if you have the money, you pay other people to do some of your caring for you. The ethical complexity of paid caregiving ends up being a big part of Tillman’s subject. She and her sisters, unable to look after their mother on their own, cycle through caregivers, all of them women of color, some of them undocumented, looking for the right fit. One caregiver messes up, and is let go; afterward, Tillman realizes she has been stealing food. “Nothing was right about this situation,” Tillman notes. But the worker was paid “a minimum wage, and the food she carried home helped her financially.” Consequently, Tillman feels, “I couldn’t stand on principle when some principles were being stretched from our side.” Wracked by ambivalence not just toward her mother but toward the people she pays to care for her mother, Tillman is exquisitely detailed about what is involved in hiring a person you don’t know to care intimately for your parent. She reveals the hourly rate she and her sisters paid various caretakers; the financial contributions to unrelated aspects of their lives; the sense of a constant unspoken deal, the sense of responsibility for, and, of course, complicity in a broken class system: “Hiring another person to be in charge of a parent’s daily life, her body, her meals, pricks an adult child’s conscience,” she writes, noting that she “didn’t know what was right, wrong. Ethical issues arose.”
Though you might not expect it, Mothercare is an invigorating page-turner of a book, propelled by Tillman’s wit and incisiveness. She is the guide I would want through the purgatory that is caretaking without clear end—a landscape she animates in barbed and direct prose. An emotional irony propels the book: Tillman’s mother gave up her own art to care for her children and was unable to let go of her competitiveness and resentment. Now, her art-making daughter resents the cost of caring for the mother who resented caring for her and giving up her art: “My life felt narrower, and not my own. I gave up some of my life, that’s the kind of thought I had, common to us who don’t want to do what we feel obliged to do,” Tillman writes. “Prosaically, I was dying on a vine, imprisoned.” One imagines from Tillman’s description that these are words her own mother might have used about taking care of her and her sisters when they were children. Surely our relationships shape our willingness to attend to the needs of another: the parent who wounded you, for example, is harder to tend to than the parent who nurtured you. But the idea that care work might make a life narrower—even as it feels like a necessary duty—is one that might be expressed by any daughter burdened with caring for a mother, even one they love unreservedly; it is a sentiment that even fulfilled mothers in the post-feminist era might still feel, given their disproportionate responsibility for emotional labor and care work. After all, as Tillman dramatizes, such work is both time- and dream-consuming.
Tillman ends her book with an extended coda on the strangeness of watching a person die. She observes her mother’s death with the vividness of a child learning a season for the first time: “Dying is primarily invisible like an oxalis’s leaves closing at night. An outward sign is that, closer to death, toes curve under, as if clenching.” The reverse of birth, her mother’s death “was also not occurring,” Tillman writes, using negation to enact negation, “her being undone in slow motion.” The hard work of trying to keep a person alive as death creeps close has a way of making the regular edifices of the world ghostly. Though this is not really a book of grief—see, above, their estrangement—one feels nonetheless Tillman’s preoccupation with doing right by her mother. An email to a doctor is especially revealing; it is the only time Tillman refers to her mother as “Mom.”
The sense of needing to think one’s way through an experience, is, in the end, what makes this an urgent piece of nonfiction. Couple that urgency with Tillman’s formal restraint, and the resulting story becomes pressurized. One feels trapped and limited along with her, stuck in the room of caretaking, where a person’s body—their being—becomes a series of tasks to undertake. That this story of mothercare is more philosophical and pragmatic than psychological is, in the end, the point: the structure’s the thing, dummy. Most readers, after all, can imagine not wanting to help a parent defecate—even those of us who are less ambivalent than Tillman about our role as children. That entrapment isn’t just the tedium or mortal fear that can descend when one is “on call.” It’s also the life that is not led, in this case by both mother and daughter.
Meghan O’Rourke is the author of The Invisible Kingdom: Reimagining Chronic Illness (Riverhead, 2022).
