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Caring for the Caregiver

Life as a Caregiver
By
WebMD Feature

Nov. 5, 2001 - Vivian Ames knows too well how life can turn upside down. She was single, in her 30s, living and working in San Francisco. Her folks were in San Diego, hundreds of miles away. She was their only child; they were "older" when she was born.

And as they aged -- as their health deteriorated -- she found herself making tougher and tougher decisions.

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First, there were the subtle signs that her mother had Alzheimer's disease -- the growing forgetfulness. "She'd put a coffee cup in the oven," Vivian remembers. "Or she'd go off driving, then not know how to get back." Vivian's father carried the burden of care, doing the cooking, grocery shopping, driving, managing things on the home front.

Then her father was diagnosed with esophageal cancer. Not too long after, she got an SOS phone call from him: "I can't take care of her anymore."

"My father resisted putting her in adult day care," she tells WebMD. "But after we tried it, he realized how much easier it made our lives. She was this high-energy person, almost destructive at that point, where we had to spend so much time watching her. That's the main thing, it gives you a break."

Within months, he passed away. Vivian knew what she had to do.

"I had a one-bedroom apartment in San Francisco," she says. "She took over my bedroom, I took over the sofa bed."

Making Difficult Decisions

It's a scenario playing out all over America. Busy adults with their own careers and families are grappling with a parent's deteriorating health. And very likely, that parent lives hundreds of miles away.

"This is what's facing the baby boom generation," says Kathy Kelly, executive director of the National Caregiver Alliance, an association that focuses on helping families dealing with brain disorders like Alzheimer's disease and stroke. "As women generally live longer than men, the single surviving parent is often mother."

Parkinson's disease, multiple sclerosis, diabetes, Huntington's disease -- they also lead families into the caregiving dilemma. Figuring out what's best for a loved one is not an easy decision, says Kelly. Families face a spectrum of possible care arrangements.

Like Vivian, some bring their loved one into their homes, managing their care the best they can. Others try "long-distance care" -- letting mom stay in her own home, hiring care managers who act as surrogate children, making sure she gets her medications, gets to the doctor, etc.

For others, assisted living centers where people live fairly independently -- or nursing homes that provide complete care -- might be the most viable options.

Some issues help make the best choice clearer. What type of assistance does mom need? Does she need help with daily living activities, like bathing, dressing, getting from the bed to the wheelchair? Or does she need total nursing care? Is the family caregiver available all day or just in the evenings? Can the family transport her to community services, like day care programs? Can they take her to medical appointments?

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