Caring for the Caregiver

Four years ago Susan Jordan was dutifully making the three-mile drive from her suburban Nashville home to her elderly mom’s house. It was a daily routine she cherished. “I’d check on her and help with her meals and her medication,” Susan says. The two would chat, share a laugh, make plans.

Then one day, a desperate call: “My mom had lost her car,” Susan, 55, recalls. “She just couldn’t remember where it was; then she got lost trying to go home. A friend found her.” Susan instinctively knew this was “more than just a memory problem,” but before she could even make the doctor rounds, her mother, Virginia Vanleer, then 88, fell and broke her hip.

Fiercely independent and determined to take care of the woman who’d given her the “perfect” childhood, Susan sprang into action. With the blessings of her husband, Ross, she brought her mom to the family house to live. “I was so happy, I cried,” she says. But in short order, reality hit: her mom began wandering, moving furniture—and each time Susan left the house, her mom would let out a disturbing wail. Meantime, Ross, a cancer patient, was dealing with his own recovery from chemotherapy. And Susan herself was juggling a full-time career evaluating child-care agencies.

“The entire family was in shock,” she says. “I felt trapped, depressed. I found myself thinking, ‘What have Idone?’ ”

Caregivers stand at particular risk for a host of mental and physical illnesses, many of which have roots in stress, exhaustion, and self-neglect.

Not one to sit on her hands, Susan set about finding help—all the while trying by herself to manage the bulk of her mother’s care. But things went from bad to worse: Susan severely injured her knee after regularly trying to lift her mom, who had taken another fall. “I was so tired,” she said.

Finally, after nearly a year of searching, Susan discovered a support group organized by the local Alzheimer’s Association, and for the first time, she says, “I knew I wasn’t so alone.”

The leader of the group gave her a book on caregiving “that became my bible,” she says, and members guided her to resources that led to the in-home care her mother needed.

It was, Susan says, the gift that saved her life. Not only did her new friends help stave off depression and a host of stress-related health problems; they showed her how to put some breathing room in her life and live again.

Among the 45 million caregivers of family and friends in this country, most don’t get thrown that kind of life raft—and the toll, experts say, is enormous. A cascade of studies in recent years has shown that caregivers stand at particular risk for a host of mental and physical illnesses, many of which have roots in stress, exhaustion, and self-neglect—symptoms some medical professionals have begun calling caregiver syndrome. Caregivers appear more likely than noncaregivers to get infectious diseases, plus they are slower to heal from wounds, says Janice Kiecolt-Glaser, Ph.D., director of the Division of Health Psychology at Ohio State University in Columbus. Kiecolt-Glaser has conducted several caregiver research studies with her husband, immunologist Ronald Glaser, Ph.D.

Caregivers also have greatly elevated blood levels of a chemical that is linked to chronic inflammation. And that puts them at increased risk for heart disease, arthritis, diabetes, cancer, and other diseases. Notably, says Kiecolt-Glaser, those levels are still high three years after caregiving duties end, especially among caregivers over 65. What’s more, the studies found a greatly increased risk for anxiety and depression.

The implications are far-reaching, given the millions of Americans who report devoting 12 to 40 hours each week or more to the most basic needs of loved ones. “Eighty percent of the long-term care in the country is done by friends and family; we are the care system,” says Suzanne Mintz, president and cofounder of the National Family Caregivers Association.