New England Regional | Explorations
When adult children care for their elders
“No matter how old you get, you’re still my baby.” How many of us have heard just such a line from a doting parent, or said it ourselves? But even though the underlying bond between parent and child may remain the same, everything else about this relationship is subject to change. As we age, and our parents become older still, we experience an evolution of the parent-child connection through stages that may be both rewarding and challenging.
For many of us, the years of maturity can result in a golden time of re-connecting with parents. As adults and often parents ourselves, we may rediscover our own parents as interesting, engaged grownups. Without the need to discipline or protect, ideas can be exchanged more freely. Travel can be shared, and tastes discussed. “A lot of people can be surprised and delighted to find that they can be on more equal footing with their parents,” says Nancy Costikyan, the social worker who manages Harvard’s Office of Work/Life Resources. “Really mature friendships can flourish.”
That time of equality may not be a recent development, but its current duration is. Thanks to improvements in healthcare and education, our time of competent adulthood is expanding and may last decades. “If you look at AARP The Magazine, you will see that many people are active well into later life,” says associate professor of psychiatry Robert Waldinger ’73, M.D. ’78, of Brigham and Women’s Hospital, who works with professor of psychiatry George Vaillant ’55, M.D. ’59, on the landmark, long-term, Study of Adult Development (see “The Talent for Aging Well,” March-April 2001, page 45). Waldinger interviews men who are now in their eighties. “We thought they’d be home all the time,” he says. Not so. “Some of them have tremendous difficulty scheduling time for us because they’re so busy. Many are extremely active and vibrant.”
This period may bring revelations. When one parent has died, for example, the remaining parent may be more free to forge a different kind of relationship with family members. Notes Costikyan, “Getting to know a parent after the other parent has died can be lovely.”
Even as aging begins to wear down our parents’ abilities to handle day-to-day responsibilities, options are available to help them retain a certain degree of autonomy. “In the 1970s, my grandparents came here right from their own apartments,” says Adena Geller, a social worker with Hebrew Senior Life, a multifaceted residential facility and teaching affiliate of Harvard Medical School. “There was no assisted living. Now,” she explains, noting the development of many day programs that provide care, meals, and activities for the elderly, “people can come for the day and go home at night.” Furthermore, in-home services such as Meals on Wheels, and public or private vehicular arrangements such as the Massachusetts Bay Transportation Authority’s program, The Ride, are extending the time during which older adults can remain at home. Continuing-care retirement communities and assisted-living facilities allow continued autonomy in safe settings, without requiring adult children to change their level of responsibility.
Yet for the vast majority of families, this period of equality may be limited. As we age, the probability increases that our parents will become less able to take care of themselves, and that adult children will need to assume a guardian or caregiver role. The shift may happen suddenly and directly, through a health crisis such as a stroke or heart attack, or the death or illness of a caregiver spouse may in turn throw the care of one or both parents onto an adult child. “Overnight,” says Waldinger, “a child may move into the role of caregiver for a parent who has previously been that child’s primary source of emotional and even financial support.”
In other families, the shift may be gradual, which puts its own strain on the relationship. Deborah Goode, a social worker who handles admissions at Hebrew Senior Life, describes a common dilemma. “Adult children will see that something is happening, and their struggle is always whether or not to intervene,” she says. “You respect [your parents’] autonomy, and at the same time, you are a son or a daughter and you feel a certain level of responsibility.” Common stress points, notes Costikyan, involve driving, particularly when children feel that their parents are no longer safe on the road. As we age and our ability to metabolize alcohol changes, drinking may become another source of worry or contention.
This evolution can be especially difficult if all the family members have previously enjoyed a period of adult friendship. “Children of aging parents can be deeply conflicted when they have to make decisions that are seen as intrusive,” Costikyan says. “Having conversations about these things can be really painful.”
In such cases of gradual decline, it may take a crisis—“a hip fracture or an episode of profound confusion and wandering out of the house,” says Goode—before this ambivalence is resolved. But at some point, most adult children end up assuming at least a partial caregiving role for their parents, whether coordinating medical services, providing home care, or simply driving elderly parents on errands.
Ann Bookman, Ph.D. ’77, began studying geriatric healthcare-provider teams as a project for the MIT Workplace Center, where she is executive director. But as she interviewed doctors, social workers, and other health professionals, she and coauthor Mona Harrington, LL.B. ’60, Ph.D. ’65, the center’s program director, became aware of the profound role family members play in geriatric care. Fragmentation of the healthcare system and corollaries such as shortened hospital stays have forced more responsibility onto family members, whom Bookman has dubbed a “shadow workforce.” For them, the center has recently produced the Family Caregiver Handbook: Finding Elder Care Resources in Massachusetts (www.familycaregiverhandbook.org).
Open communication can ease this transition. Adult children can ask their parents how they would like to live as their health declines. Topics such as durable powers of attorney, healthcare proxies, and financial planning may be difficult to broach because parents may resist relinquishing control. In such cases, advises Deborah Goode, be creative. Try bringing up the situations of relatives or friends who have endured declines, as a way to begin the conversation. At the very least, she says, read up on your options. “Be educated, so you’re not learning about these topics at the height of emotional crises.”
Ideally, this reversal of parent and child roles can even be seen as a gift. In her book Lifelines (Harvard University Press), associate professor of ambulatory care and prevention Muriel Gillick, M.D. ’78, discusses the role that family can play in the life of the very old or frail elderly. She acknowledges that simply persuading older parents to accept care can be a major challenge. In previous generations, she explains, parents expected to be cared for by their children. “Now it’s seen by the older people as unfortunate.” Such a perception can exacerbate problems between adult children and their aging parents. “Because we tend to view dependency as a bad state,” she adds, “we fail to recognize that we actually have the opportunity to help people and that caregiving may be a good and loving thing to do.”
For adult children, this final phase can be stressful as well, partly because of social changes. Demographically, says Robert Waldinger, the number of single older adults is increasing. We “are living longer, yet divorce rates have climbed. When parents are on their own and begin to need help, the kids move into caretaking roles sooner than they would if parents were partnered.” In addition, he notes, families are more dispersed than at any previous time in history. “It’s much more common now for aging parents to live at some distance geographically from their children,” he says. “That makes parent-child relationships more complicated. This is more the case in the United States than in many other parts of the world. Our mobility as a society sets the stage for problems with eldercare and for problems with childcare.”
In addition, about three-quarters of American women are in the workforce at any given time, according to Ann Bookman’s research, yet women, she notes, remain “the traditional caregivers of children, of elders, of the sick and disabled.” And the recent trend toward later parenting can mean that many adult children will be caring for infants or young children as well as their aging parents. “We’ve got these things colliding,” says Bookman. “The population is living longer and there are fewer of us around during the day to do the things that elders need.”
The result, says Nancy Costikyan, is the kind of stretching of time and resources previously associated only with childcare. “It’s a real quality-of-life issue for the contemporary worker,” she explains. “The workplace is getting smart about issues like the need to address childcare, flexibility, a whole range of worklife issues, [but] we’re not as good at understanding how to respond to eldercare needs,” which are still seen as a private family issue, and often as the responsibility of women. “Eldercare issues,” she believes, “are where childcare issues were 25 years ago.”
Even the great advances in healthcare can add to burdens of choice and responsibility. “There are so many medical choices out there,” says Deborah Goode. “But they may not be appropriate.” Especially when parents and family members have not been able to talk about end-of-life care—such as medical intervention, feeding tubes, or resuscitation—these responsibilities fall on adult children. “We’re asking patients and their surrogates to make a whole range of decisions and try to understand what those interventions mean,” Goode explains. But “Many of our meetings are to help families figure out how to maintain their relative’s best quality of care.” In the case of aging parents with cholesterol concerns, for example, she notes, “If [someone’s] last days are upon us, a few ice creams might make those days enjoyable. The idea isn’t only prolonging life, but [maintaining] quality of life.”
Such decisions may be the final challenge of our relationship with our aging parents. Difficult, yes, but as Bookman says, “There’s hardly anybody who is not touched by this.”
Freelance writer Clea Simon ’83 lives in Cambridge and can be reached at www.cleasimon.com.