IT ISN’T ABOUT JUGGLING RESPONSIBILITIES OR EVEN THE HANDS-ON WORK
The more you do as a caregiver and the longer you do it, the more stressed you may feel, right?
Not necessarily, says Rhonda Montgomery, who chairs the program in applied gerontology at the University of Wisconsin in Milwaukee. For 35 years, she’s studied family members who care for their elderly loved ones.
In fact, more caregivers could get relief from isolation, stress and depression if the source of those problems was better understood.
That family caregivers experience stress is a given. Between 40 and 70 percent are stressed enough to show symptoms of clinical depression, according to the Family Caregiver Alliance.
But the main source of stress and burnout is typically not the hands-on work that caregivers do or the need to juggle responsibilities, though those are real contributors, Montgomery says.
Instead, it’s that caregiving challenges the unique set of internalized values and expectations they have about themselves, their relationships and their lives — expectations shaped by family and cultural norms.
“The belief is that the more you’re doing and the longer you’re doing it, the more you feel stressed. Our data didn’t show that,” Montgomery says of her work with research partners. “The real strain on caregivers is the emotional work that’s going on.”
A Constant Tension
Caregiving creates a tension between what you’ve known to be true, what your role has been and what you need to do to provide care. For instance, you have a parent whose judgment you’ve always respected or whom you’ve never seen undressed, and as a caregiver, you make decisions for your parent and give her a bath.
The rules and norms you’ve lived with change due to the circumstances. Distance grows between the relationship you once had and the relationship you have now, and between your idealized expectations of yourself as a caregiver and the reality of what you’re able to do, Montgomery explains.
Caregiver stress isn’t what Montgomery set out to study. The question that drove her research was: “Why won’t caregivers use the resources or the services that we offer them when we clearly know they need them?”
The internalized expectations, norms and rules of family relationships turned out to be a big part of the answer. “You can have the most beautiful facility,” Montgomery says, or the best program of supports, “but if that caregiver hasn’t adjusted their rules to accept that it’s OK … they will never use it.”
How to Adjust the Rules
Caregivers need help to examine and adjust their internal rules, the way parents need to adjust their expectations and methods as kids go from compliant infancy to the limits-testing phases of toddlerhood or adolescence, she says. And professionals who want to support caregivers need to learn to speak the language of their internalized values and norms.
She saw an example of this in Seattle, where a young colleague was working with caregivers in the city’s Japanese community.
“Age is revered, so how could this young social worker know anything? She wasn’t being accepted into the homes of the wives that were doing the work — until she started coming for tea, as sort of a pseudo daughter. Then the women could open up to her, but not as a young professional,” says Montgomery.
Laura Trejo, general manager of the Los Angeles Department of Aging, says she learned to tune in to the cultural and personal values that guide caregivers when an initiative she tried to launch got a completely cold shoulder. This was “years and years ago,” she says. “I helped to develop what I thought was an extremely vetted informational brochure for [caregivers in] the Latino community.” But when she invited them to meet and join the program, “nobody came.”
At a follow-up focus group, participants were all too polite to tell her what she’d done wrong, but Trejo finally got one woman to whisper the answer in her ear: “I had used the word ‘burden.’” The woman said, “None of us has that.”
The Right Kind of Help
Emmer Beard, a Los Angeles schoolteacher, has welcomed help, as long as it’s in line with her belief that the right thing to do is care for her mother at home. They are each other’s only remaining family. Beard relies on the support of friends, but also an adult day care program, a community transit system that takes her mother there and sensors throughout the house that keep her mother from wandering and other dangers.
The woman she always knew as strong and independent was diagnosed with Alzheimer’s disease nine years ago. She can no longer be left alone, verbalize or take care of her own basic physical needs or recognize that the person living with her is her daughter.
Having absorbed that dissonance and many other changes in what she expected life to be in her own middle years, Beard says, “My biggest fear is I never want my mother to go into a convalescent home.”
Added Stress With Changing Challenges
Beard has weathered most of what Montgomery describes as five phases of caregiving. The transitions between them, when caregivers’ expectations face new challenges, are when stress is most likely to increase. It means high stress and depression can come even early in the caregiving journey, before heavy physical demands or time pressures exist.
But early-stage caregivers tend to be overlooked, she says, in part because they don’t see themselves as caregivers or seek help, and in part because public resources for caregivers tend to go toward programs like respite care and other later-stage needs.
The State of Washington provides a window into how the lives of caregivers and care receivers might improve if stress at any phase was more frequently identified and relieved.
Since 2009, the state has used a caregiver stress assessment and referral system that Montgomery and her colleagues developed and commercialized as TCARE (for “Tailored Care”). Last year, Washington’s Department of Social and Health Services reported that by using it, the state had reduced the number of elderly being placed in long-term care facilities or needing other publicly funded supports.
Washington ultimately hopes to reduce its Medicaid costs this way.
Despite a growing population of elderly, Montgomery says, the need for improving care for stressed caregivers and helping them sustain their work over the long haul is still largely unrecognized and “one of the biggest issues in health care.”
Denise Logeland is a longtime business writer and editor whose beats have included the health care industry and financing for medical technology start-ups.
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