Support for Spousal Caregivers

Men as Caregivers - Stories and Statistics on the Changing Face of Caregiving
By Cathie Gandel, Caring     (September 2008)

When Sean and Colleen Feldman* married in 1971, neither expected that 18 months later she'd be diagnosed with multiple sclerosis. For the past 36 years, as his wife's condition has slowly worsened, Feldman has been her primary caregiver. "I have two full-time jobs," he says. "I'm an economist and a nursing-home administrator."

Although caregiving has traditionally been thought of as a "woman's role," evidence suggests that Feldman is no longer a rare example. Between 1984 and 1994, the number of male caregivers increased by 50 percent, according to a national long-term care survey published in 2002. More recent studies show that today one-third of all caregivers are men. "These are statistics you don't hear about," says Teleshia Brimmer, manager of the Family Caregiver Program at the New Orleans Council on Aging.

"Over the past 15 years, gender roles have changed dramatically as family structures have changed," says Fay Radding, senior gerontologist with the MetLife Mature Market Institute, the insurance company's research center on aging and retirement. "With more women in the work force," she continues, "men are stepping into the role of caregiver." Longer life spans, smaller families and geographic separation are other factors influencing this trend.


Public Image
Bill Hyer, 55, has been taking care of his 90-year-old mother for the past 14 years, both at her home in Altamonte Springs, Florida, and the nursing home where she now resides. "When I took care of my mother at home," he explains, "I found that neighbors looked down on me. They thought I was a bum living off my mom. They didn't believe I was really taking care of her." Hyer thinks that a woman would not have faced this kind of ridicule.

After he moved his mother to the nursing home, Hyer faced another challenge. "At first I noticed that medical personnel seemed reluctant to share information with me," he says. "They seemed more open with my sister. Maybe it would have been different if it had been my father I was caring for."

Today, however, Hyer is not just accepted but appreciated. He was recently named Male Caregiver of the Year by the Florida Respite Coalition, a non-profit organization that serves as an information and referral source for respite care throughout the state. One reason: this former hairdresser donates his time and services to other residents of the nursing home.


Shared Complications
While some obstacles may be gender-related, men also have to cope with depression, financial hardship and limited personal time-problems faced by female caregivers as well. A 2003 study by the National Alliance for Caregiving and the Center for Productive Aging at Towson University in Maryland conducted for the MetLife Mature Market Institute, focused on how men balance work and caregiving. It found that caregiving also had a negative impact on family relationships, friendships and personal activities for both men and women.

Caregivers of each sex often neglect their own health because they are too focused on their loved one. "They skip their doctor's appointments, don't eat right or take time for themselves," says Teleshia Brimmer.

Robert Simpson*, who works full time and has been taking care of his chronically ill wife for 15 years, agrees. "It's difficult to maintain who I am, to have time for me," he says. But because he's president of a small business, Simpson has the flexibility to grab a few minutes for himself when he must.

"I felt my main purpose was just to keep things going," notes Richard Anderson, who took care of his late wife for 29 of their 31 years of marriage. He is now president of the Well Spouse Association, a nonprofit organization that provides peer support to those caring for a partner with a chronic illness or disability. "It gets harder. And somewhere along the way," he admits, "I lost myself." Anderson didn't find Well Spouse until four years before his wife passed away. "Like many," he laments, "I wish I had known about it earlier."

Men may also have to fight against their designated role as problem-solvers. "I knew my wife's disease (scleroderma) was not curable," says Anderson, "that I had to live with it and could not ˜fix' that. But I was always trying to ˜fix' the little problems that came up."


Tradition On Its Ear
Some of those "little problems" included daily activities women traditionally handle. "Men all of a sudden have to take on domestic roles," says Brimmer. "They have to engage in duties they haven't done before, learn new skills, fill in the gaps. Sometimes it's difficult."

The first two months of taking care of his mother, 62-year-old New Orleans native Walter Goodwin was overwhelmed. "I had to do everything," states the retired high school principal. "Cleaning, cooking, personal care, feeding, laundry. Sometimes I thought I just couldn't go on. But, after two months, I realized all I could do was my best."

Goodwin's solution to making the job more manageable was to establish a routine. "I'll tell you one thing," he says, "you have to have a routine." For him, that means he's busy from 8:00 a.m. to noon with bathing, preparing breakfast and lunch, taking his mother outside, changing the bed, cleaning the house or doing laundry. He takes a break at noon and comes back at 4:30 p.m. for the evening routine. "I know that, during those hours in the morning and at night, I can't plan anything else," he says. "It keeps conflicts to a minimum."

While the study for MetLife found that men are less likely than women to discuss their situation at work, it also found they are more likely to delegate or hire an aide to assist with personal care. "Women tend to feel caregiving is their job and may even stop working if finances permit it," Anderson says. "In my experience, men are more apt to hire someone and continue working to pay for the help."

Sean Feldman uses outside help almost 80 hours a week. "It's costing a fortune," he admits, "but there's no other way I could do this."


Matters of Intimacy
While emotions are involved in any caregiving relationship, Anderson cautions against lumping all caregiving together. "Spousal caregivers are different because of the intimacy of the connection," he explains. "Sexuality is affected by the illness. We become celibate spouses." Some marriages, he notes, break up after the diagnosis of a chronic illness.

Intimacy issues of a different kind affect men who are taking care of their mothers: the question of personal care. "Taking care of my mother's physical needs was a new role for me as a man," confesses Goodwin. "But I had to do it." He resolved his discomfort by talking things through with his mother as he did the various tasks. "I asked her if it was all right if I bathed or cleaned her," he says. "I didn't want her to feel bad."


Essential Support
Caregiving is a lonely occupation for both men and women, but perhaps more so for men because some believe that society expects them to be confident, assertive, courageous and not to share their feelings readily, says MetLife's Radding

"Particularly in a marriage," adds Anderson, "there is the feeling to try to keep everything within the relationship and not talk about it to anyone else”even family or close friends."

"The important thing is to get support," advises Radding.

"Everybody," notes Simpson, "needs a chance to vent or whine once in a while with somebody who can give us a hug."

Many organizations and social-service agencies are beginning to offer male caregiver support groups. Groups can be found through local Area Agencies on Aging, disease associations or online. Bulletin boards and online chat rooms for caregivers may be perfect for those who have demanding schedules and who want anonymity. Try several different groups until you find the one that works for you. "When I found Well Spouse," Simpson confesses, "I cried."

But there's nothing like personal contact, and men are beginning to join and open up even in co-ed caregiver support groups. "Of the twenty caregivers in my groups," says Brimmer, "five are men. This is where caregivers can know they're not alone, and the men share their stories like everyone else."

Support groups offer more than social opportunities. "When you find others who are in the same situation," says Radding, "you also may find solutions." That happened to Sean Feldman. "Well Spouse helped me through the maze of hiring a home health aide," he says, "particularly about how to handle compensation and take care of payroll taxes. You get practical information from those who've gone down the same path."

It's a path more and more men will travel.

*Names changed by request


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