As the mother of three boys, Daniela Pernis Muldowney ’84 is well practiced in managing a hectic household. Those skills were essential during the past few years when she became the primary caregiver for her elderly parents. Although her parents lived in their own apartment near her home in a Boston suburb, Muldowney was kept busy shuffling their medical appointments, hospitalizations, and various crises, while also caring for her sons, who are now 19, 16, and 9.
“I would have to drop everything and go to the hospital,” says Muldowney. “I’d call my friends to pick up my kids. There were significant numbers of times when I’d have to choose between being at the hospital for my father or at a play for my son. Or I’d have to choose which parent to support.” She admits that when her eldest son was applying to college, she never met his college counselor, and confesses, “I’d never seen the college until we dropped him off.” Muldowney takes care of her now-widowed 85-year-old mother’s bills and taxes and fields “15-20 calls a day.” She explains, “The fact that I don’t work outside the home means my mother thinks I should be available.”
Her situation is emblematic of that of many others caught in the “sandwich” generation: women raising children who are also taking care of elderly parents and relatives. According to an AARP 2009 report, of more than 40 million adults providing care for family or friends, nearly 70 percent are female. Many, no doubt are daughters or daughters-in-law. Sometimes the care is direct, other times the role is defined as managing logistics for a relative still living independently, or in an assisted-living facility or a nursing home. New skills may be needed, such as how to be an effective and appropriate advocate with physicians or with staff at an assisted-living residence.
“The majority of my patients have adult children with young children,” says geriatrician Cathryn Devons ’82, an assistant clinical professor of geriatrics at Mount Sinai Hospital in Manhattan, and director of geriatrics at Phelps Memorial Hospital Center in Westchester County. “My patients’ children, who are in the waiting room, coordinate appointments with picking up children from the school bus.” Devons, who has three young children and a 93-year-old mother, understands the responsibilities of a “sandwiched” caregiver. “Being a woman, and in the same situation, I have practical experience and empathy,” she says.
The challenges are, of course, different for each woman and her family. What makes it stressful for many caregivers is that no one is really prepared for this particular role. No matter what one’s course of study at Barnard, nor one’s professional expertise, learning how to provide care, advocate for older relatives with hospitals and doctors, and navigate the complex universe of insurance and entitlements can be daunting.
And the choice may not be as stark as taking Dad to the emergency room versus watching your daughter’s soccer play-offs. Vacations get canceled, frantic phone calls interrupt the workday or quiet time in the evening, and medical emergencies and hospitalizations cause further disruptions. There can be tensions with siblings when there are disagreements about how best to care for a parent, and even financial burdens related to providing care or sacrificing one’s own employment prospects.
Joanna Davis Berkowitz ’75, a physician in south Florida, says that when her parents first moved near her they were about 30 minutes away, in good health and very independent. About six years later, their medical needs increased, and they moved much closer. There were “times when my kids got a little bit of short shrift, when I’d bang my head against the wall,” Berkowitz concedes. She had to juggle her role as primary caregiver for her parents with the demands of Hebrew school, dance recitals, and proms for her three children.
“It is, and it was, exhausting,” she says. “Life was like when the babies were little. I would go to work, and say, ‘I may have to leave.’” On balance Berkowitz believes she was lucky. As an academic doctor with a supportive division chief, she had more defined hours than physicians in private practice. Also, her parents were financially independent, so neither Berkowitz nor her two siblings had to provide monetary support for them.
Of course, some caregivers also say they welcome the opportunity to give back something to beloved parents. “I am very grateful to my parents for their lifelong support,” says Maria Rudensky Silver ’80, a retired Foreign Service officer who lives in her suburban Westchester childhood home with her children and her 89-year-old mother; her father was with the family until his death last January at the age of 90. “I’ve provided more care for them, but both provided a lot of nurturing for my kids.” Her father frequently drove her children to their activities. Today, Silver helps manage the banking and bills, and bathes her mother.
Silver’s situation is somewhat less common. For many, the pressures are unending. “There’s a huge amount of stress,” says Belinda Carstens-Wickham ’73, professor of foreign languages and German at Southern Illinois University and mother of four. She finds it challenging and exhausting to balance the needs of her 15-year-old, who rides horses and takes lessons four days a week, with her role as caregiver for her mother, who lives in a nearby assisted-living residence.
“My daughter gets out of school at 2 p.m.,” says Carstens-Wickham “I have to get her home, and then visit my mom. I feel more pressured now at 61, with my mom in assisted living and with one child at home, than when I was a single mom with two young children. Every day I have to figure out when I have to see my mom, take care of Hannah, and prepare classes.”
Even when one’s role is primarily that of a long-distance manager, the responsibility can weigh heavily. Seana Anderson ’69 inherited the caregiving role for her mother when her sister died in 2005. Her mother, physically healthy but wheelchair-bound, was in an assisted-living facility, but memory loss required a move to a nursing home. Anderson, executive director of the American Trust for the British Library, is the one responsible for decision-making. “I try to visit her every four to six weeks.” Not easy, since Anderson and her partner live in a multi-generation household in Brooklyn, with Anderson’s daughter and grandchildren. She admits to “a constant, high level of stress.” Similarly, Muldowney, who cares for her mother and has three children, acknowledges, “I’d get short-tempered. “With all these people poking and prodding at you, you yourself disappear. You’re exhausted and feel guilt all the time.”
“Guilt and anger are very normal reactions,” says Reeva Starkman Mager ’64, director of DOROT East, a social-service agency for the elderly in Manhattan. “People start feeling out of control. It’s important to get help. Examine your support system; give small, defined tasks [to someone else] so you aren’t burdened with all of it. You need to develop and maintain friendships. If you cycle into isolation, you don’t have [any] available [relief].”
The sandwich role can just as readily also apply to someone who doesn’t have children but is trying to balance multiple roles. “I grew up with extended family—my grandmother and an aunt—living in the home,” says Angela Macropoulos ’82 who returned to the family home on Long Island to take care of her mother. “Caregiving is not new to me.”
Macropoulos has been dealing with her mother’s neurological condition, which leaves her unable to walk. Although her mother remains at home and attends a day program nearby while Macropoulos is at work, (She’s a lawyer and also a stringer for The New York Times.) managing care has been challenging. “No one tells you how to navigate,” she says. “For the last year and a half, I’ve been navigating between my life with my partner...and caring for my mother. I believe my caregiving staves off depression for her, [but] I’m tired all the time.” She adds, “I’m being pulled in different directions and have chronic anxiety.”
There are remedies to alleviate some of the on-going stress related to caregiving. Devons suggests seeing what services can be delivered to the home, to reduce the stress of maneuvering a frail elderly person in and out of cars. Social workers can provide home visits, eligible elderly can receive Meals on Wheels, and more and more geriatricians provide home-care visits for their patients. If finances permit, geriatric-care managers will help with the logistics and details of many aspects of elder care, from paying the bills to finding health aides, to arranging medical appointments.
Support groups composed of people in a similar situation who will understand what you’re going through can be invaluable for the caregiver’s psychological health. Many are free, and the advice that’s shared can be practical and useful. Respite and day care can also be invaluable, to give the caregiver a break from the relentless routine.
Mager urges caregivers to get support from friends and other family members and to look at ways to simplify their lives whenever possible. Outsource tasks, like house cleaning, cooking, or even chauffeuring a parent or child to appointments. “Many women don’t even self-identify as caregivers, but doing so changes how you understand what you are doing and the level of your involvement in a new way,” says Mager. “Although a tremendous burden, the role of caregiver also builds strengths, allows for reconciliations, and introduces new skills.”
Simply understanding that being a “good enough” caregiver may be good enough. “You cannot fix or reverse time,” says Mager. “Be careful about your goals. What can you reasonably do? The benchmarks should be whether your parent is safe, and has some quality of life.” Ultimately, caregiving is about how to honor your parent, and preserve yourself and your family, offers Mager.
—by Merri Rosenberg
—Illustration by Jon Han