Spouses face challenges in caring for themselves and their ailing partners
Tuesday, May 25, 2010
They met on a blind date in 1949 and married two years later. They lived in the same Cape Cod-style house in Silver Spring for nearly 50 years. So when Leonard Crierie was diagnosed with Alzheimer's disease in 2005, there was no question that his wife, Betty, would take care of him at home for as long as she could.
Betty led him into the shower, helped him dress each morning and took him everywhere with her because, once he started wandering, as some dementia patients do, she dared not leave him alone. She learned how to change the colostomy bag he wore since he'd survived rectal cancer years earlier. She slept, fitfully, with a monitor by her bed so that she could respond if he needed her at night.
"It was difficult, but I was able to take care of him," says Betty, now 80. "Because it happens slowly, you don't realize how bad it's getting."
She agreed to have Leonard attend an adult day program at nearby Holy Cross Hospital -- he enjoyed socializing there -- so that she could get a few hours' break several times a week; she found a Holy Cross caregivers support group very useful. But she refused the pleas from her three adult children to hire an aide to help at home. "I always felt like I had it under control," she explains, though her children thought the $18-an-hour cost also troubled a frugal woman who shops at dollar stores.
As the months passed, "we could see the stress level affecting her," recalls her daughter Linda Fenlon. "The frustrating part was, we wanted her to have some independence, some quality of life. But she saw it as her duty in life to take care of him."
For four years, Betty Crierie rarely asked for or accepted her family's help, until a Wednesday last June. As she left her support group meeting, she remembers, "I got this funny feeling in my chest." It worsened on the 10-minute drive home. She called her daughter and said, "I'm calling 911. I think I'm having a heart attack."
'In sickness and in health'
Caring for a sick or disabled elderly relative exacts a toll -- physical, emotional, financial -- on any family member, but being a spousal caregiver brings particular challenges.
"Spouses are older and dealing with their own age-related health limitations," says Steven H. Zarit, a Pennsylvania State University gerontologist. The tasks they shoulder have grown more demanding: Family caregivers now administer arsenals of medications and undertake procedures, from wound care to dialysis, that were once the province of medical professionals.
Moreover, today's longer life spans, in which once-fatal conditions such as heart disease have become manageable chronic illnesses, mean that the "sickness" part of "in sickness and in health" can last for many years. Spouses determined to single-handedly honor their vows, says Suzanne Mintz of the National Family Caregivers Association, "are using their old rules to fight a new problem."
The medical and psychological literature have long reported that caregivers face risks to their own well-being, especially when they're caring for people with dementia. Caregivers under stress have higher levels of depression and anxiety; their immune systems suffer. A 2005 Commonwealth Fund overview found that caregivers of all ages reported chronic conditions -- including heart disease, diabetes, cancer and arthritis -- at nearly twice the rate of non-caregivers, 45 percent vs. 24 percent.
In an oft-cited study published in the Journal of the American Medical Association in 1999, University of Pittsburgh researchers followed nearly 400 elderly spousal caregivers for four years and reported that those experiencing mental or emotional strain had 63 percent higher mortality rates than non-caregivers. (Caregivers not experiencing emotional or mental strain did not have elevated mortality rates.)
And a study published this year by a team from the University of South Florida and the University of Alabama at Birmingham found that high caregiving strain among spouses increased the risk of strokes by 23 percent; the association was particularly strong among husbands caring for wives.