Marty Beilin plays many roles in his day-to-day life -- from breadwinner to husband to father of two daughters. But for the past five years, he has also found himself thrust into a new and unanticipated role -- as primary caregiver for his wife, Debbie, who has multiple sclerosis.
"It changed everything," says Marty, who teaches school in the Philadelphia area. "There's shock, denial, anger, guilt, and then finally acceptance."
Marty has assumed a long list of responsibilities in caring for his wife who must use a wheelchair or a motorized scooter when she leaves the house. "Debbie has chronic, progressive MS, but luckily she has not been so impaired that I've had to stop working," says Beilin. "At this point, we try to live as normally as we can. The key is to find a way to be a caregiver, but also to go beyond just coping skills and to have a life."
According to the National Family Caregivers Association (NFCA), there are more than 54 million Americans like Beilin who have provided care for an elderly, disabled, or chronically ill family member or friend during the past year. Even though caregiving is often thought of as a role assumed primarily by women, an NFCA survey found that 44% of caregivers are men.
Beilin is president of the 14-year-old Well Spouse Foundation, which provides information and support for spousal caregivers. "There hasn't been enough attention to the needs of family caregivers," says Beilin. "People see the person in a wheelchair, but they don't really focus on the person pushing the wheelchair."
Rising to the Challenge
Whether an ill relative has been diagnosed with Alzheimer's disease, Parkinson's disease, multiple sclerosis, Lou Gehrig's disease, or a stroke, male caregivers often find their new role to be daunting and all-consuming. Most men have grown up in a household -- and certainly a culture -- in which females have been perceived as the primary family nurturers. Yet often by necessity, more men than ever are rolling up their sleeves and helping an ill loved one with day-to-day tasks such as dressing, toileting, bathing, eating, changing dressings, and managing medications.
Kathleen O'Brien, vice president of program services for the Alzheimer's Association, says that many men may not have the same comfort or confidence level as women in handling the tasks of caregiving. "Some have a particularly difficult time with the more intimate care, such as a son bathing and dressing his mother," she says.
To compound the stress in their lives, baby-boomer men may find themselves sandwiched between elder care and child care, and as they juggle work, family, and the needs of an aging parent, their stress and frustration can often turn into anger, despair, exhaustion, and burnout.
In confronting the responsibilities before them, men are more likely than women to delegate some of the caregiving responsibilities to others -- either to other family members, or to outside help who they've hired to handle many of the home-care duties.
"Some men feel that they don't have to do it all on their own, and they're better than women at saying, 'I need some help with this -- you do this part, and I'll do that part,'" says Carole Cohen, MD, associate professor of psychiatry at the University of Toronto. "In the work world, they may have become accustomed to this kind of delegating, whereas women of the same generation may be less likely to feel that it's OK to get help."
Gerontologist John Khajit, a family consultant with the Family Caregiver Alliance, agrees. "Men tend to approach caregiving a little differently than women, and are more likely to try to problem-solve the situation," he says. "They seem quicker to hire a home-care worker, to call social workers, and to contact local agencies. I've talked with men who want to move things forward, want to take the next step, and who ask what they need to do to handle the immediate problems in front of them."
Financial pressures can become part of the caregiving equation as well. A study by researchers at San Francisco VA Medical Center found that caregivers of frail elderly relatives frequently miss work or quit their jobs altogether because of their responsibilities at home.
"Caregiving can be a huge financial strain upon families," says Mary Mittelman, DrPH, author of Counseling the Alzheimer's Caregiver. "But the emotional strain tends to be even greater."
The Benefits of Caregiving
Although the stress and hardships of caregiving are undeniable, the experience isn't necessarily without positives. A study by Cohen, published in the February 2002 International Journal of Geriatric Psychiatry, evaluated close to 300 people (more than 30% of whom were men) who were caring for seniors. More than 70% of these caregivers said they were happy in the caregiving role, or had positive feelings about at least one aspect of it. Most commonly, they described enjoying the companionship, and the satisfaction of meeting an obligation and providing a better quality of life for the individual receiving care.
"Caregiving is a challenge and a difficult job for both men and women," says Cohen. "But the people who report finding positive aspects find it a little less challenging."
Leslie Gerber was the primary caregiver for his mother from the time of her diagnosis with Alzheimer's disease in 1995 until her death in January 2002 at age 85. "I was very close to my mother," says Gerber, who lives in New York City. "It was the right thing to do."
Nevertheless, Gerber admits to feeling plenty of frustration in the beginning, "but then I learned to just go with it." He handled many of his mother's immediate needs, managed her checkbook, and arranged for her doctors' appointments and trips to the beauty parlor until he finally hired live-in help to share some of the burdens. He also joined a support group sponsored by the Alzheimer's Association, which he found "very helpful in that it allowed me to meet others going through the same experiences."
Beilin says that becoming active in the Well Spouse Foundation, and participating in one of its 50 active support groups, has helped him avoid burnout. "No matter how kind and considerate your friends and co-workers are, they can't fully understand what's happening to you and your family," he says. "I needed people to connect with who really understood the kind of emotional stress and pressure I was under."
Getting Men Involved
Some studies have documented the ability of support groups to ease the emotional pain and anxiety and fight the social isolation associated with caregiving. But even though these support groups for caregivers are available in most parts of the country, men lag behind women in their willingness to take the initiative to participate.
In an attempt to attract more men, the Alzheimer's Association sponsors support groups solely for male caregivers, which are becoming increasingly popular. O'Brien says that although the association offers services in more than 300 communities in the U.S., some men prefer participating more anonymously in online support groups through the organization's web site.
Men also tend to react differently to the depression that can accompany long-term caregiving. They are less likely than women to admit that they feel depressed, and to talk with their doctor about it or to take antidepressant medication. Men, in fact, are more likely to deal with their depression by working long hours at the office or by abusing alcohol.
By contrast, women are often more receptive to counseling to manage their depression, says Khajit. "They cope with their emotions in a different way."
Male caregivers may neglect themselves in other areas -- eating an inadequate diet, ignoring their need for exercise, getting too little sleep, and postponing visits to the doctor for their own medical ills. But the consequences of these behaviors can be serious.
Recent research at Ohio State University found that the chronic stress associated with caring for a family member with dementia can weaken the disease-fighting immune system of elderly caregivers. At the University of Pittsburgh, investigators evaluated elderly individuals (48% of whom were men) who were caring for an ill spouse; the strain of caregiving increased their risk of death, compared to counterparts who were not caregivers. As a result, many doctors and social workers tell caregivers that they can't care for someone else unless they're also caring for themselves.
"Caregivers often make themselves the last priority," says Khajit. "Some of them haven't had a day off in literally years. We talk to them about ways to arrange for a little time away so they can recharge their batteries and nourish themselves."
Mittelman, research associate professor of psychiatry at New York University School of Medicine, notes that if the caregiver isn't healthy, then the patient is going to suffer. "Counselors often say, 'Take care of yourself because you're the only person who can take care of the patient,'" adds Mittelman.