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Hardly carefree

Demands on family caregivers can be demoralizing

Jeris Baker lives with her 91-year-old father in his home and takes care of him.

She pays his bills. She doles out the 17 medications he takes every day for issues ranging from dementia to heart problems and macular degeneration.

She watches over him at night, worried about his sleep apnea. She takes him to the doctor and deals with the maze of his medical insurance. She makes sure he has a comfortable life.

And she’s grateful.

“I’m glad I have time with my dad,” says Baker, 46, a Sacramento, Calif., art teacher. “Once they’re gone, you don’t have a second chance.”

She and many of the other 62 million family caregivers in the United States couldn’t pay for the quality of care they give their loved ones. And according to an AARP report released last week, the nation couldn’t pay for it, either.

Family caregivers – increasingly, middle-aged offspring taking care of their elderly parents – provided $450 billion worth of unpaid home care in 2009, says AARP.

That’s more than the country’s total Medicaid spending that year. It’s also 20 percent higher than unpaid home care totals for two years earlier.

“If the family caregiver were no longer available, we’d see an immediate rise in nursing home use and rehospitalization,” says Susan Reinhard, AARP senior vice president for public policy.

“Being a family caregiver is becoming a fact of life, and it’s becoming more complicated because of the increasing demands of health care.”

For two-thirds of older adults, family members are the only source of care.

They step up to help, because that’s what families do. Some – like Sacramento resident Deborah Terry, whose 80-year-old mother, Marie Thomas, has dementia and lives with her – don’t even think of what they do as caregiving.

“I think of it more as, my mom had problems, and I’m helping her,” says Terry, 61, who works in accounting. “Caregiving sounds like a nurse, you know? She’s just my mom.”

Still, taking care of loved ones can exact a toll.

Statistically speaking, the average caregiver is a 49-year-old woman who works full time and spends 20 hours a week helping her elderly mother for five years’ time. She makes 15 percent less than colleagues who don’t take care of aging relatives, according to U.S. Census data.

As she juggles her responsibilities, she’s likely to reduce her work hours or quit. During the recent economic crisis, says the National Alliance for Caregiving, she was 20 percent more likely to consolidate households with her elderly loved ones to save money.

And she’s so stressed, researchers have found, that she may lose up to 10 years off her own life expectancy.

Linda Bachini helps care for her late mother’s elderly brother and sister, who live together. Recent medical problems sent Bachini’s aunt, 91-year-old Helen Payne, into a nursing home – temporarily, the family hopes.

Now Bachini’s uncle, who is 84 and suffers from macular degeneration and kidney disease, is alone.

“Last week, I was getting kind of hopeless,” says Bachini, 55, who works in a jewelry store. “What do I do? Do we sell their house? Do I quit my job to take care of them?

“My husband and I get frustrated and exhausted. We’re just so busy. It’s challenging being there with my uncle and then going to the nursing home and then doing our jobs. If my aunt can’t come home, my uncle will have to live with us.”

To ease the situation, she’s trying to find part-time care through Seniors First, a nonprofit agency that offers services for the elderly.

Support groups and community organizations can also help family caregivers find relief from the stress, suggests Peter Reed, chief executive officer of the Pioneer Network, a national elder care advocacy group.

“It’s about taking care of yourself as much as the person you’re providing care to,” Reed says.

Up to 70 percent of family caregivers suffer clinical levels of depression, experts say.

“To some extent, who wouldn’t be depressed?” Baker says. “Who would enjoy this?”

She remembers her father as a tall, lean man with a good sense of humor who was dedicated to his family.

But now, at 91, John Hill’s dementia and other medical problems are getting the best of him. The other day, Baker says, he woke her in a panic before dawn, convinced he was trapped in a bird cage.

“It’s emotionally stressful,” she says. “Just extremely stressful.

“He’s your dad. Sometimes, he’s pretty much the way he used to be. And some days he’s completely off his rocker.”

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