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.
She could deal with constantly forgetting her shopping list, and she'd made
a habit of writing down where she'd parked her car, each and every time. But in
her mid-50s, Janis Mara's memory problems started costing her money. Late fees
began piling up because she forgot to pay her bills.
"Over time, it really intensified," she says. "I wanted to think
I was just getting older, but my fear was that it was Alzheimer's."
After bugging her HMO for an MRI, Mara discovered that her lapses weren't
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
"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
"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?