Inside a modest Alexandria, Va. apartment, where a fan moves the morning air, a buoyant mother-daughter duo discuss their living arrangement – the meds, doctors, new routines and how much has changed since the two became housemates.
"Caring for my mother takes a village," says Anne Karoly, 57. "Yup, yup," echoes Marilyn, who, like her daughter, exudes a frank humor about the role reversal that's resulted from her dementia. Marilyn jokes that she wanted to give her daughter the experience of motherhood, to which Anne coyly responds: "I wasn't exactly expecting an 83-year-old child."
The two talk like a couple who has endured something – forever on the verge of new and old memories and inside jokes – and share a love that's stronger and deeper as a result.
Marilyn moved from Northern California two summers ago when a couple of accidents indicated she needed help – the utilities were shut off in her mobile home after she forgot to pay the bill, and she got lost on a walk in Anne's neighborhood. Anne, the middle of Marilyn's five children, was selected to tell her mom she could no longer live on her own.
"She was the one with the balls to do it," Marilyn says. For her part, she was relieved – both to receive care and move in with a child similar to her in disposition and interests (bawdy language aside, Marilyn's late husband was a priest, and she finds fellowship at her daughter's church and the seminary where she works.) "For me, the big step was when I admitted to myself that I needed to do something," she says. "I got to the point where I was kind of scaring myself."
Anne's breaking point came about a year later. Between caring for her mother and managing her own life, she was gaining weight and getting depressed and realized that, to help her mother, she needed help, too. She found it through a variety of outlets: an online community called caregiver.com, a therapist, time-management coach and a diet and fitness program that has put her in the best shape of her life, she says. (She points out a collection of medals on a small table for top placements in various races, including first in her age group for a 50K).
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Although each caregiving situation differs by the issues involved and resources available, experts stress the importance of getting help for this role. At stake is not only the health and welfare of the person receiving care but also the person giving it. "In our research, we found that family caregivers experience depression at rates twice the national average," says Andy Cohen, CEO and co-founder of Caring.com, an online publication and support community. Sleep loss, deteriorating health and physical, emotional and financial stress are among the risks caregivers face, he says, along with neglecting relationships and work duties.
The typical caregiver spends 20 hours a week on care, tantamount to a part-time job, says Lynn Friss Feinberg, a senior strategic policy adviser for AARP's Public Policy Institute, which last week issued the third in a series of reports on working caregivers and is pressing to expand the Family and Medical Leave Act, which currently only covers employees caring for a spouse, parent or child and carries other restrictions. Today, more than two-thirds of working caregivers are shifting or cutting hours, and 10 percent quit their jobs or take early retirement, she says. In the last five years, 42 percent of the American workforce has cared for an aging friend or relative. In the next five years, the percentage will jump to roughly half the workforce.
"The big issue when you are working and caregiving is how do you manage the ongoing caregiving crises," says Denise Brown, founder and owner of caregiving.com, an online community for caregivers. "It's not one and done. It's one, OK breathe; OK, here's another one. Now what do we do?"
That volatility is a way of life for Trish Hughes Kreis, whose epileptic brother, Robert Wright, 47, moved in with her and her husband not long after the couple's children moved out. "You just don't know what's going to happen from day to day," she says. He suffers at least two seizures a day, causing him to fall on others, against walls and on floors – even knocking a toilet off its foundation once. With such unpredictability, she's given up on her initial attempt to strictly separate her caregiving duties from her work as the manager of a Sacramento, Calif. law firm. She's found support at her office as well as Brown's online community – and inspiration from her brother, whose dogged optimism she details on her blog, RobertsSister.com, where he's pictured, wearing a dimpled smile and a white helmet
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Those who succeed at caregiving "take advantage of all the help and resources they can find," says Brown, noting that technology can assist you, whether it's through a meal-planning service, video chats with someone you are caring for remotely or managing a schedule online (one is available on her site).
At Hebrew Rehabilitation Center in Boston, Mass., social services leader Robin Bromberg advises caregivers to join support groups or find an outlet for expressing and monitoring their feelings. "If you feel you need professional help, there's absolutely no shame in that," she says. "This is a natural part of aging, with children becoming caretakers, and it being emotionally very filled ... Watching your loved one age is a loss."
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At the same time, for all its stress, caregiving can provide both parties with purpose and comfort.
These days, Marilyn Karoly seems perfectly at home with her legs strewn easily across a blue loveseat, draped in plaid and quilted blankets, and her cross pendant matching the cluster of crosses arranged on the wall behind her. She speaks with the help of a tracheostomy tube fastened around her neck like jewelry with a pretty pink ribbon complementing her hot pink and orange ensemble.
"The hardest thing that happens to us is sometimes [the] place that gives you the greatest growth," Anne says. Ironically, caring for her mother has shown Anne, for the first time, how to ask for help for herself. "I say it's Marilyn's gift," she says.
And then, with a remark that recalled her own years of caregiving, Marilyn says, quietly: "It's one of the hardest lessons of parenting."
For more information on caregiving, consider the following resources: The National Association of Area Agencies on Aging, AARP, the National Alliance for Caregiving; Caregiving.com and Caring.com, which offers a senior care directory, replete with customer reviews and a toll-free support line: 866-824-8174.
Corrected on 07/05/2013: A previous version of this story misstated the location of Hebrew Rehabilitation Center.