Caregiving spouses urged to take care of own health

SACRAMENTO, Calif. — Jackie Hackbart is a caregiver under stress.

She can't leave her husband, Bob, 82, who suffers from dementia, alone in their Citrus Heights, Calif., town house — and she can't leave him with a sitter, because he forgets where she's gone and gets distressed.

Since the retired chemical engineer's diagnosis in 2005, dementia has robbed him not only of memory and cognition but also of independence. In many ways, it's robbed his wife of her independence, too.

"The past five years have been a challenge," said Hackbart, 78, a retired dietitian. "Mostly, I try to keep a stiff upper lip."

But the stiff upper lip exacts a steep toll: Hackbart has been hospitalized twice in the past year for gastrointestinal bleeding, most recently in March.

Gerontologists use the term "caregiver burden" for the ongoing emotional and physical stress of providing care, and research shows that no one feels more caregiver burden than the elderly spouses of dementia patients. They pay the highest price in terms of their own health.

Elderly caregiving spouses have a 63 percent higher chance of dying than people the same age who aren't caring for a spouse, says the American Medical Association. They're at particular risk of developing depression and sleep problems.

In a tragic irony, according to a recent American Geriatrics Society study, they're also six times more likely to develop dementia themselves compared with people whose spouses don't have dementia.

While two-thirds receive some assistance from other unpaid caregivers — usually their adult children — the number employing outside caregivers has dropped to 35 percent, says the AARP.

In short, the burden remains squarely in the home, on the spouse.

"We encourage caregivers to take care of themselves first," said Denise Davis, Alzheimer's Association program director. "With any disease, whether it's dementia, stroke or cancer, the caregiver needs to be taken care of, as well.

"So many of them think they can do it all, and they can do it best. It's hard for them to let go."

And it's hard for them to ask for help.

After Bob Weast, now 80, was diagnosed with Alzheimer's disease in 2001, he developed a compulsive eating pattern and other obsessive behaviors, and for a while, he wandered from home. His constant monitoring in large part has fallen to his wife of 55 years.