What Remains Is Love

Ellie Schellhammer Goldberg ’71 was still deep into motherhood duties—overseeing her teenage boys’ after-school and weekend sports activities—and tutoring math several hours a week, when her 91-year-old mother began showing signs of dementia.

For the next decade, she juggled the demands of being a wife and mother with the growing daily needs of a parent whose health was spiraling downward. Then, shortly before her mother died, her father-in-law lost his eyesight and needed her care, too. One night, her husband looked across the table and said, “You look tired,” Goldberg remembers.

She’d become so busy, she hadn’t even noticed. “It took its toll, emotionally and physically,” she says.

The demands of caregiving for a declining parent or spouse can mount slowly—from picking up groceries or monitoring finances to near-constant supervision. Add to that the emotional confusion that sets in when roles change and child becomes parent or when life partner becomes nurse and keeper. Even under the best of circumstances, with financial stability and strong social networks, the incremental accumulation of responsibilities and emotional intensity adds up. “The experience of having someone totally dependent on you is stressful, in ways you’re not always conscious of,” says Nell Lake ’89, author of The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and Love. But there’s another side of the story, too. The journey of caring for a loved one in decline may be harrowing at times, but many alumnae report the experience offers moments of grace and joy and, in the end, changes them. “I realized that the experience was pretty all-encompassing,” Goldberg says. “But it gave my life purpose and meaning.”

“I’m a great believer in seeking help through this process,” like creating a support network of other women.

Caregiving, in one form or another, will come to most of us, observes Benjamin Capistrant, assistant professor in the Smith School for Social Work and a social epidemiologist who studies national data on trends in caregiving. As the baby boomer generation continues to age and as fertility rates decline, the number of people in need of care will increase and fewer offspring will be there to shoulder the responsibility of caring for them, Capistrant says, citing data from the U.S. Census and the United Nations. “It’ll be unprecedented,” he says of the rapidly escalating need for caregiving. “We’ve never seen anything like it.”

The work of caring for a loved one or family member is generally unpaid labor—with a value estimated nationally at between $148 billion and $188 billion a year, according to the Family Caregiver Alliance—and chances are it will fall to women. Some 60 percent of caregivers are women, according to the National Alliance for Caregiving. That’s in part because of traditional gender roles, but also because women tend to outlive their husbands. And then as these women face health issues, it is the daughters who often step in.

Further statistics from the caregiving alliance show the period of active caregiving may be as long as five or even 10 years. For the caregiver, that can mean exhausting stretches managing medical care, tracking streams of medical information, negotiating with insurance companies and figuring out how to pay for home or institutional care.

And that doesn’t include tending to a loved one’s personal care needs. “You become a medical social worker, a nurse and in some cases a lawyer,” Capistrant says. Through it all, caregivers may experience intense emotions: fear, loneliness, resentment, despair. The resulting fatigue and stress put caregivers at increased risk for cardiovascular disease, hypertension, depression and more.

Still, surprising instances of connection can take place, especially if caregivers begin to see their role as an act of devotion, rather than just burden, Capistrant says. “Without minimizing the incredible hard work involved, there are also unsung benefits,” he says, even if that attitude takes awhile to click in.

Goldberg, for instance, had grown up on stories of what care looks like from her mother’s Italian immigrant family, with each generation living with their elders well into adulthood. Then, when the older generation declined, they spent their final years with their adult children. That was the natural order in Goldberg’s family. So when she moved far away to Miami, she shouldn’t have been surprised when her mother said, “You’re abandoning me.”

Eventually, when her mother developed dementia, she did come to live near Goldberg in Florida. As her mother’s illness progressed and her own responsibilities mounted, Goldberg sought out the silver lining around each storm cloud. Rather than rail against how her fiercely independent mother was changing, she celebrated the serene and loving persona that emerged as the disease stripped away old patterns of behavior. When her mother no longer recognized her, referring to her simply as “Sweetie,” the same moniker she used for nurses and strangers alike, Goldberg focused on the things that mattered to her more, like the closeness that was deepening between them. “I didn’t feel I rose to the occasion until she came and lived here,” Goldberg says. “When my mom didn’t abandon me in her dementia, but embraced me in her heart, that was the best thing.”

Like many other caregivers, Goldberg learned that unexpected lessons emerge from the complicated interplay of challenge, heartbreak, resilience and bonding. When she was growing up, Goldberg says, her mother had schooled her in everything from Italian to piano to horticulture; now Goldberg was discovering that the final lesson her mother would pass along came from the disease itself. Having shed the past, and no longer able to grasp the future, Goldberg’s mother became an accidental Zen master, inviting Goldberg to live fully in the present. Even the inevitable role reversal of caring for the one who had cared for her had its bright side. “Tuning into the fact that it’s not all about me is liberating,” Goldberg says.

Closeness at a cost

Similarly, Nancy Davis O’Hara ’82 got to know her mother, who suffered from COPD, in a new, deeper way during the time she cared for her. She learned her mother’s stories of growing up in the segregated South, marrying young and happily, and pursuing a career as a psychologist. Still, as much as O’Hara cherished their closeness in those final years, she remains clear-eyed about the work involved in caring for her mother, who passed away in May.

When her mother grew ill, in the years following her father’s sudden death, O’Hara began a schedule of frequent commutes from her home in Cranston, Rhode Island, to her mother’s home in Brighton, Massachusetts. She’d check in on her mother and help with tasks her father used to do, such as paying the bills and balancing the checkbook. Eventually, O’Hara, who is married and runs her own solo law practice, moved her mother out of the family home and into a sunny ground-floor apartment just a mile from where O’Hara now lives with her husband. Daily visits became possible, but that also meant taking on her mother’s chores before heading home to manage her own household.

O’Hara maintained her equanimity, but toward the end, as her mother’s COPD worsened and other chronic ailments took hold, the cumulative effects of attending to her mother’s needs began to mount. “I miss my mom terribly. But I don’t miss the work” of caregiving, O’Hara says.

That work can be especially hard on caregivers who are feeling the effects of age themselves. The average age for caregivers of adults is 49, with some 10 percent age 75 or older. Not surprisingly, many have arthritic joints or back problems of their own.

Ledlie Dinsmore Bell ’63, who cared for her husband, Norman, for 12 years after he was diagnosed with Parkinson’s disease, recalls a nurse who, on noticing Bell’s biceps, remarked, “How’d you get those guns?” Bell answered, “I do the equivalent of weight training just getting Dr. Bell seated upright.” Simple outings, like attending a symphony together, became a test of patience and strength. After helping her husband bathe and dress (tasks she eventually hired professionals to assist with), she would get to the music hall, where she’d gather her strength to maneuver him into his wheelchair and push him up the ramp into the building and to their seats. “He was a big man, and I’m small,” she says. (To avoid injury, she called on the principles of posture and alignment she learned in physical education classes she took at Smith.)

Bell also learned to recognize that the strength of their relationship—their long history of communication and trust—helped them both get through the challenges. When her husband had delusions or paranoia that were spurred by the disease, she could reassure him. “He’d talk aloud as he fought some vision of someone doing something evil, and I could say, ‘You’re dreaming,’” she says, “and he would believe me.”

Susan Allen Toth ’61 missed lively conversations with her husband, James, so she found other caregiving women with whom she could talk and commiserate. Photograph by Amanda Friedman.

Healing Power of Friends

The old axiom of putting on your oxygen mask before helping others guided Susan Allen Toth ’61, author of No Saints Around Here: A Caregiver’s Days. But even with her attempts at self-care, including taking walks, going out to dinner or a movie and planning trips on her own, the work of caring for her husband, James, who had Parkinson’s and died eight years ago, took its toll.

When a well-meaning friend sat her down and said, “Susan, you’re killing yourself,” and urged her to put her husband in a nursing home, Toth took the words to heart and visited residential care options around San Diego. But the institutional settings “chilled my blood,” she says. She considered one of the homier places, but when she realized that she, too, would be spending many hours each day in that setting, she decided it would be better for both of them to keep her husband at home for as long as possible. There, they’d be surrounded by things they loved, and when she needed a break she could retreat upstairs.

But then there was loneliness to contend with. Like many caregivers, Toth missed her husband’s companionship and their lively dinner table conversations. So, having learned at Smith the value of female friendships, Toth created her own informal support network made up of other women in a similar situation. The friends would check in by phone to commiserate, complain and even laugh, sharing a kind of gallows humor about some of the grim details of their lives as caregivers. “I’m a great believer in seeking help through this process,” she says.

Emotional connections

Phyllis Chinlund ’61 isn’t one to sugarcoat the experience of caring for her husband, Ray, a photographer who had Alzheimer’s disease. In her book Looking Back From the Gate: A Story of Love, Art, and Dementia, Chinlund describes the stark realities of watching the lively, creative, curious man she loved become forgetful, agitated and easily irritated.

The disease robbed her of daily pleasures like intellectually stimulating conversations with her husband about art and history, and because of the lost income from Ray’s work, they had to leave their apartment in Manhattan and move to Maine.

And yet.

For most of the seven years that her husband had Alzheimer’s, “He was still someone to come home to and to love,” Chinlund says. When verbal communication was no longer an option, she began to shift more to their emotional attachment. “Rather than try to explain things or show the person they’re mistaken, you enjoy the emotional attachment in whatever way is possible,” she says. That meant nurturing Ray’s artistic side by encouraging him to draw. Rather than be dismayed by his fascination with seemingly mundane tasks, like sorting coins, she showed an interest in what interested him.

“He was still someone to come home to and to love you enjoy the emotional attachment in whatever way is possible.”

A geriatric social worker at the time, Chinlund took the lessons she learned at home and applied them to her work with clients. Whether her clients suffered from dementia or simply thought differently than she did, Chinlund learned to connect with each person at their level, focusing on the emotional experience of what was being said.

The disease also reconnected her with journaling.Writing, she found, offered solace and helped her work through her feelings. “I’d sit at the computer and write when something troubling was going on,” she says. “I realized I should make more of an effort to talk about the good.” Fourteen years after Ray’s death, she turned those journal entries into a book, which then gave her the opportunity to meet with readers who shared similar experiences. In the end, writing and publishing helped her gain perspective and make meaning from her years as a caregiver.

Private struggles, public issue

For Judith Wolfe Reichert ’59, the experience of caring for her husband, John, who was diagnosed with early-onset Alzheimer’s when they were both in their late 50s, gave her insights into ways to help other caregivers. She recalls trying out a support group for caregivers, only to find that “just going and hearing about other people’s sadness” wasn’t helpful. Her husband’s experience of attending day programs for people with Alzheimer’s was similar. Once an esteemed faculty member at Williams College, he was now seated at a table with a group of strangers and told to draw pictures. “He’d been a college professor,” Reichert says. “He didn’t want to be treated like a kindergartner.”

Now, some 14 years after her husband’s death, Reichert volunteers as a docent at the Clark Art Institute in Williamstown, Massachusetts. On Mondays, when the museum is closed to the public, she and other volunteers welcome people with Alzheimer’s and their caregivers to the galleries. Neither a support group nor a day program, “Meet Me at the Clark” offers a dignified experience for both caregivers and those with various forms of dementia. As Reichert watches participants engage with an impressionist painting or an 18th-century silver soup tureen, for example, she senses a kind of communal, if unspoken, bond among the caregivers.

Although caregiving is a nearly universal experience, not everyone experiences the issue in the same way. In "Culture of Care," see how gender, culture and even sexual identity all play a part.

Programs like this—where caregivers and recipients can have meaningful connections and a respite from a sometimes grueling routine—are becoming more popular. And they may be a bridge to bring what feels like an intensely personal experience into the public realm.

For Nancy O’Hara, caregiving, as stressful as it was, defined her days. With both parents gone now, she can reflect on what she lost and what she gained, even as she adjusts to her new normal. As she wrote in a recent class note, “After being mom’s primary caretaker for three years (almost to the day) since my dad’s death, I find myself a little lost with so much time on my hands but extremely grateful for having had the chance to get to know her in a different way and for having been by her side, holding her hand, when she passed.”

Looking back, Ellie Goldberg, too, feels changed by the act of caregiving. She turned to writing as a way to reflect on her relationship with her mother, and is publishing her memoir. “It’s interesting how some situations, as trying as they are, can be kind of poignant,” Goldberg says. “Poignant is a good word, because it implies a tinge of sadness with an uplifting quality.”

This story appears in the Winter 2018-19 issue of the Smith Alumnae Quarterly.

Tzivia Gover is the author most recently of The Mindful Way to a Good Night’s Sleep.

Photograph by Jeffery Salter