Caring For Elderly And Disabled Is A Family Affair

Here’s something else to consider in the definition of what it means to be an American: Being a caregiver for an elderly or disabled loved one.

A new study says almost one out of three adults in the U.S. currently serves as a caregiver. The time and energy they put into caregiving becomes like an unpaid job.

On average, they spend about 19 hours a week providing care, doing everything from bathing and dressing an elderly parent or loved one to balancing a checkbook or doing household chores.

“This is essentially a half-time job,” says Elinor Ginzler of the AARP. The AARP and the National Alliance for Caregiving sponsored the survey, called Caregiving in the U.S. 2009, with funding from the MetLIfe Foundation. (The MetLife Foundation also underwrites reporting on aging at NPR.) Researchers interviewed nearly two thousand caregivers.

Many of the results of the survey are similar to those from earlier versions in 2004 and 1999. Two-thirds are women. The average age is about 48. Almost all–86 percent–care for a relative. Most often, 36 percent of the time, it’s for a parent. On average, caregivers have been providing care for 4.6 years, and three in ten report doing so for five years or more.

Ginzler says one of the biggest changes to show up in the survey this year is just how much caregiving can interfere with regular work. “Making accommodations in the workplace has increased in several ways,” she says. “In most cases, two-thirds of them, means they either go in late, leave early or take time off.”

In addition, large numbers said they’ve reduced work hours or taken a less demanding job (12 percent); turned down a promotion (6 percent), lost job benefits (6 percent), taken early retirement (3 percent) or given up work entirely (9 percent) to care for a loved one.

And 20 percent–like Kathleen Ballweg–have had to take a leave of absence.

In 2001, Ballweg was working in New York City as a flight attendant. But back home in Wisconsin, her father had Parkinson’s Disease and her mother was struggling to take care of him. So she closed down her apartment and drove back home and moved in with her parents.

She took a six-month leave of absence from her job. When it was up, her parents still needed her. So she cut her work to part time, and commuted back and forth from Wisconsin.

Now, it’s been five years since her father died. But her mother developed Parkinson’s, too. So Ballweg keeps her part-time hours for the airline. She’ll take a three-day trip to Cairo or Capetown. Then come home to Wisconsin for a week to cook and care for her mother.

“It’s the thing I’m most proud of,” she says, “I’m really proud of the way I’ve taken care of my Mom and Dad.”

A few years ago, Ballweg’s sister moved back to Wisconsin, too, and she helps some. That’s one of the fastest growing trends: As families try to avoid expensive care like assisted living, more members of a family help out to provide unpaid assistance.

Most people in the survey say they don’t consider caregiving a hardship. The longer a person has been providing care, the more likely he or she is to report being in fair or poor health. That came to 23 percent of those providing care for five years or more. But it was striking that, overall, 57 percent of caregivers say their health is excellent or very good.

But large numbers feel isolated. More than half, 53 percent, say their caregiving responsibilities take away time from friends and other family. And they’re the ones who are most likely to say they are emotionally stressed.

This was the first time the survey asked about caregiving for disabled children. And that turns out to be a large proportion of the total: About one out of 7. And while most caregivers for the elderly said it was very or somewhat easy to coordinate health care for their loved ones, that wasn’t true for those who provided care for disabled children. For them, 40 percent said it was at least somewhat difficult to coordinate care, including care at home and school.