Caring for a loved one with Alzheimer's disease can be a 24/7 job, taking an emotional, financial and even physical toll on caretakers, especially if they're women, according to the Shriver Report on Alzheimer's.
The report, released Oct. 15, details the special burden women face as caretakers. The majority of Alzheimer's patients and caretakers are women, and more than half of them report serious emotional and physical stress that results from taking on the care of their ailing loved ones.
"All my time is taking care of my mother. Your whole life is devoted to somebody else, as if you had a little baby," says Ana Marie Ortega, 63, who has been caring for her 89-year-old mother Teodora Ortega for the past decade since she was diagnosed with Alzheimer's.
As with many caretakers, live-in nurses or nursing homes were not an option for Ortega because of financial and personal reasons, leaving the Sacramento, Calif., native to care for her ailing mother on her own.
"The nursing home was not what I wanted for mom," she says. "My mother practically raised my daughter so I could get a college education. She worked so hard all her life. You have to do the moral thing. Life doesn't repeat itself. She might be gone within a year or two and I don't want any regrets."
That choice has meant a lot of sacrifice for Ortega: She is on leave from her job at the governor's office so she can care for her mother, leaving tight finances and little time to herself.
"It's an emotional, mental, physical struggle," she says. "She can get very angry and mean when the medication is wearing off and she wasn't that way before. It's a cruel disease; it robs the person of their life and the people around them. This time it happens to be me because I chose to take care of mom."
"Taking care of elderly family members is still seen as women's work," says Mary Guerriero Austrom, professor of Alzheimer's Education at the Indiana University School of Medicine in Indianapolis. "Women are still the major kin keepers of the family.
"In a spousal situation, men do a phenomenal job, and we shouldn't lose sight of that, but the classic thing is women as caregivers, often daughters or daughters-in-law."
The idea that women are more likely to take on care duties for Alzheimer's is consistent with past research on the subject, experts say. "In the studies we've done, 75 percent or more of the caregivers have been women," says Kenneth Hepburn, professor and associate dean for research at the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta.
And because women are "more likely to be sandwiched between caregiving roles as mother and as caregiver for a parent," the women can face more stress and more total caregiving than their male caretaking counterparts.
Of female caretakers in the Shriver Report, nearly half report their stress levels as a five on a scale of one to five. Nearly half also report spending less time with their spouses or partners because of caretaking duties and 39 percent say that it puts a strain on their marriages.
"Women often are not only caregivers for their parents but primary caregivers for children and others," says Dr. Ladson Hinton, director of Education Core for the UC Davis Alzheimer's Disease Center Sacramento, Calif. "Women with professional careers have an amplification of stress and competing demands."