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., townhouse - 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 elderlyspouses of dementia patients. They pay the highest price in terms of their own health.
Elderly care-giving 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.
“A lot of the time, you can’t go places and do things you’d like to do,” said Lois Weast, 73. “There’s nobodyavailable who really understands what’s needed to keep an eye out for him.”
In 2007, she developed pancreatitis and collapsed in their Carmichael, Calif., home. While she spent weeks recuperating in the hospital and at a skilled nursing facility, Bob lived withtheir grown daughter, who enrolled him in the Sutter Senior Recreation and Respite program in the Placer County, Calif., suburbs.
“I do a little shopping and maybe a little visiting while he’s there,” said Weast.
On a recent morning at Twelve Bridges Library in Lincoln, Calif., where the program meets four mornings each week, participants worked on making pressed flower bookmarks. Also on the schedule were games, a talk on the Grand Canyon and a chicken tenders lunch. The whole point is to give caregivers relief from their duties: a little breathing room.
“This generation is awesome,” said Joni Trykar, the program coordinator. “It’s their devotion to each other. Their own health is declining. They can’t really make the situation work. But they made a promise to each other that one wouldn’t put the other in a nursing home.
“I tell people, ‘If you don’t take care of yourself, who will take care of your loved one as well as you do?’ No one will.”
For couples in their 70s and 80s, the challenges can be considerable.
People raised with traditional roles, for example, can find the role reversal uncomfortable. Care-giving wives have to adjust to paying the bills and doing house and lawn maintenance, Trykar said, while care-giving husbands have to learn to cook and clean.
The caregivers confront the living death of the person they knew, as well as their own growing tide of grief.
Help available for caregivers Among the resources available for caregivers: The Alzheimer’s Association’s website, alz.org, includes a caregiver stress test and information on depression and how to find local support. The association maintains a helpline staffed by social workers who can answer questions and provide assistance, (800) 272-3900.
The AARP website, aarp.com, provides advice and hosts community conversations for caregivers.
Family, Pages 34 on 07/28/2010