The Rapid Rise of the Male Caregiver
By some counts, their numbers have doubled in recent years. But are they getting the support they need?
Sherri Snelling, executive director at Keck Medicine of USC and author of A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.
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In 2009, according to a National Alliance for Caregiving/AARP study, men accounted for 34 percent of the nearly 65 million family caregivers in the United States. But more recent surveys show the number of men in this traditionally female role has risen rapidly, driven by a combination of factors, including the recession, changing gender expectations and longer life expectancies.
A 2012 analysis by the Pew Research Center's Internet and American Life Project finds that men may now represent as many as 45 percent of all family caregivers. And a new study from the Alzheimer's Association reports that between 1996 and 2011, the percentage of men among adults caring for a family member with Alzheimer's disease or dementia almost doubled, to 40 percent from 19 percent. This shift is most likely due to demographics. Among people over 65, Alzheimer's and dementia are more prevalent among women than men. More than 3.9 million cases of Alzheimer's disease have been diagnosed in women over 65, compared with only 1.8 million diagnoses for men in the same age group.
One Man's Journey
After receiving that crisis call, Cifone traveled back and forth across the country for two years attempting to fulfill both his career and family responsibilities, a struggle familiar to many of the nation's 8 million long-distance caregivers. Eventually the financial and mental toll of such frequent travel became prohibitive. He took a 12-week unpaid leave of absence from work, as allowed by the federal Family Medical Leave Act, but he eventually chose to leave his job and home and move back to California.
Cifone's father had suffered a second stroke and was experiencing symptoms from other health issues, including diabetes. At the same time, his mother faced both a hip replacement and congestive heart failure. At one point, with his parents on different floors of the same skilled nursing facility, he rode the elevator from one health crisis to another.
Cifone did get married and have a son during his caregiving years, and credits their support in maintaining his spirit. "My wife, Debbie, looked after me while I looked after my parents," Cifone says. "She helped with my mom but mostly she was my support network through this journey and I could not have done it without her. I was the hero for my parents, but my wife is my hero."
Sons and Husbands, on the Spot
Today's male caregivers do not only aid their parents. An estimated 3 million men care for an ailing spouse full time. One of them is Peter Rosenberger, who hosts a radio show on caregiving at WLAC in Nashville, Tenn., and wrote Wear Comfortable Shoes, a poignant yet humorous book about the 28 years he's spent caring for his disabled wife. Rosenberger married his wife, Gracie, after a whirlwind college courtship. But he quickly went from newlywed to caregiver, as complications from a serious automobile accident she suffered at age 17 emerged, including seizures. She eventually had to have both legs amputated and has endured more than 70 operations in all.
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"The hardest thing I have had to cope with is acknowledging there are three in my marriage – me, my wife and her medical issues," Rosenberger says. "But her courage has touched my soul and keeps me going. When I look at her I don't see the frail, sick, double amputee. I see the most beautiful girl in the world – my sweetheart."
As the Numbers Rise, Support Increases
Of people age 65 or older, 20 percent will live until age 90. But 1 in 2 Americans will develop dementia after age 85, to name just one chronic illness. The statistics make it clear that more boomers, men and women, will inevitably step into a caregiving role, whether for parents or a spouse.
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Men bring some advantages to the role. For example, they appear to cope with the stress inherent in caregiving more successfully than women, according to a 2012 study by researchers at Bowling Green State University. "We found that men seem better at dealing with caregiver stress because they take a 'block and tackle' approach to tasks," says the study's lead author, associate professor I-Fen Lin.
"They complete a caregiving task and move on to the next thing," she explains. "Conversely, we found women are more socialized to be nurturing than men, but internalize their caregiving performance with constant worry and anxiety, thus leading to higher stress levels and more persistent stress."
Rosenberger believes men are more assertive when advocating for loved ones with such authority figures as doctors and hospital staff, demanding straight answers on the condition of their parent or spouse. On the other hand, he says, other male caregivers he has met also struggle with the chaos and fragmentation of the health care system. Men seek to solve problems, he says, and when a dilemma has no clear solution, they can feel ineffective and, over time, prone to depression.
When male caregivers struggle, however, they tend to be more reluctant to seek help than women, according to the Bowling Green study and other research. "It's very difficult for them to ask for help," says Rhonda Travland, co-author of Who Says Men Don't Care: A Man's Guide to Balanced and Guilt-Free Caregiving, who studied the experiences of four generations of male caregivers.
Fortunately, as their numbers grow and the discomfort and stigma of talking about their tasks declines, male caregivers are beginning to turn to support groups to lessen the isolation that so often comes with the role. Rosenberger found a support group through his church and the Alzheimer's Association and other groups are ramping up efforts to reach out.
"Only 20 percent of the callers to our help line are men," reports Jed Levine, executive vice president of the association's New York City chapter. "I know there are more men out there who are providing care for a parent, spouse or other relative. I want them to know that help and support is out there for them."
Online support groups are trying to meet the demand. The home-care agency Homewatch CareGivers created what it believes is the first online resource of its kind, the Male Caregiver Community. It enables peer-to-peer advice and support on such challenging issues as dealing with sundowning among Alzheimer's patients and bathing a parent of the opposite sex. Other groups, including the Well Spouse Association, provide similar guidance for a variety of medical and emotional concerns.
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Caregiving often involves a series of chaotic episodes, but men have found, as women have, that there are moments of precious clarity. Cifone's father, for example, experienced memory loss after his strokes. It made him struggle to recognize his wife, whom he sometimes thought was his sister, and his son, whom he often believed was his older brother, who had died in World War II. As Cifone worked with his father to help him regain his memory, though, the older man displayed a gratitude he rarely had before.
"My father had spent his adult life an emotionless man, never apologizing for anything, but the stroke changed him into the sweetest, nicest man you have ever met," Cifone says. "I cherish one of our last conversations where he apologized for not telling my mom and me how much he loved us more often. That was a gift of caregiving I did not expect."
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