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).
[Read: 6 Ways to Make Time for Your Health.]
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?"