We need some more room, says Carolyn Johnson. It's been 16 years since she gave up her job and her home to take care of her mother, Florence. At 81, the frailties of Florences age are compounded by multiple sclerosis. She can't bathe or clothe herself and needs someone with her all the time.
They wanted to put her in a nursing home initially, but I resisted that, says Carolyn. And the trade-off has been, she's lived longer.
Many Americans agree with Carolyns decision. One in four U.S. households must find care for an elderly relative; the majority of them are choosing to take care of their relative at home.
The reason? To make sure their loved ones get the care they deserve. As Carolyn says, I'm always on call for whatever her needs might be.
But that comes at a very real cost. Carolyns career is in a shambles. Her income has fallen from $40,000 a year to just $6,000. And a recent study found home caregivers like Carolyn typically lose a staggering $650,000 in missed wages and Social Security and pension benefits. Caregiving has become my career, says Carolyn.
Her predicament is a challenge to Congress that's getting louder and louder, as Americans grow older and older. There are some proposals that might help. Among them, an administration plan earmarking $125 million for support services and a $3,000 a year tax credit for caregivers.
We have a major problem, says home care advocate Janice Jackson of the National Association of Area Agencies on Aging. The biggest social problem facing our aging society is paying for long-term care.
Jackson sees the funding proposals for funding relief as little more than a first step. Medicare and Medicaid dont cover home caregiving.
Eighty-one year old Betty Herbst agrees. I like my independence, she says. And its something shes not about to give up, despite diabetes and Alzheimer's. Her daughter Mary is able to care for her mother with help from her employer, AT&T. Mary gets flexible hours, without being penalized. If something happens and I call over and say I gotta go, there's no questions asked. I'll call them. We'll work out how we're going to code it later, she says.
But that's the exception. Less than one-quarter of large companies provide elder care assistance of some sort. That leaves Carolyn Johnson and millions of others like her feeling that while theyre caring for loved ones, no ones caring for them.