Men As Caregivers
By Jack Halpern
Bill Sanders, 57, has been taking care of his 90-year-old mother for the past 14 years, both at her home in Brooklyn, New York 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." Sanders thinks that a woman would not have faced this kind of ridicule.
After he moved his mother to the nursing home, Sanders 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, Sanders is not just accepted but appreciated. This former hairdresser donates his time and services to other residents of the nursing home.
The Alzheimer's Association and the National Alliance for Caregiving estimate that men make up nearly 40 percent of family care providers now, up from 19 percent in a 1996 study by the Alzheimer's Association. About 17 million men are caring for an adult.
"It used to be that when men said, 'I'll always take care of my mother,' it meant, 'My wife will always take care of my mother,"' said Carol Levine, director of the families and health care project at the United Hospital Fund. "But now, more and more men are doing it."
Often they are overshadowed by their female counterparts and faced with employers, friends, support organizations and sometimes even parents who view caregiving as an essentially female role. Male caregivers are more likely to say they feel unprepared for the role and become socially isolated, and less likely to ask for help.
Men experience more anxiety in handling the multiple demands of care while also learning new skills, have greater physical health difficulties and depression, do not tend to be familiar with dealing with social service agencies, and are often uncomfortable asking for help.
Women still provide the bulk of family care, especially for intimate tasks like bathing and dressing. At support groups, which are predominantly made up of women, many women complain that their brothers are treated like heroes just for showing up.
But with smaller families and more women working full-time, many men have no choice but to take on roles that would have been alien to their fathers. Just as fatherhood became more hands-on in the baby boom generation, so has the role for many sons as their generation's parents age.
Much more needs to be learned about their experiences and the challenges they face. Betty J. Kramer and Edward H. Thompson Jr., both experienced researchers in the area of men as caregivers, provide an in-depth and comprehensive overview of the topic in this collection of articles from various experts in gerontology, social work, psychology, and sociology. Special consideration is given to gay male caregivers of partners with AIDS, men who care for a family member with dementia, fathers of adult children with mental disabilities, spousal care of women with cancer, and sons caring for parents. This valuable collection of current research addresses a much neglected but vitally important area of caregiving.
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.
But there's nothing like personal contact, and men are beginning to join and open up even in co-ed caregiver support groups 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 John Radley, "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."
Today, however, Sanders is not just accepted but appreciated. This former hairdresser donates his time and services to other residents of the nursing home.
The Alzheimer's Association and the National Alliance for Caregiving estimate that men make up nearly 40 percent of family care providers now, up from 19 percent in a 1996 study by the Alzheimer's Association. About 17 million men are caring for an adult.
"It used to be that when men said, 'I'll always take care of my mother,' it meant, 'My wife will always take care of my mother,"' said Carol Levine, director of the families and health care project at the United Hospital Fund. "But now, more and more men are doing it."
Often they are overshadowed by their female counterparts and faced with employers, friends, support organizations and sometimes even parents who view caregiving as an essentially female role. Male caregivers are more likely to say they feel unprepared for the role and become socially isolated, and less likely to ask for help.
Men experience more anxiety in handling the multiple demands of care while also learning new skills, have greater physical health difficulties and depression, do not tend to be familiar with dealing with social service agencies, and are often uncomfortable asking for help.
Women still provide the bulk of family care, especially for intimate tasks like bathing and dressing. At support groups, which are predominantly made up of women, many women complain that their brothers are treated like heroes just for showing up.
But with smaller families and more women working full-time, many men have no choice but to take on roles that would have been alien to their fathers. Just as fatherhood became more hands-on in the baby boom generation, so has the role for many sons as their generation's parents age.
Much more needs to be learned about their experiences and the challenges they face. Betty J. Kramer and Edward H. Thompson Jr., both experienced researchers in the area of men as caregivers, provide an in-depth and comprehensive overview of the topic in this collection of articles from various experts in gerontology, social work, psychology, and sociology. Special consideration is given to gay male caregivers of partners with AIDS, men who care for a family member with dementia, fathers of adult children with mental disabilities, spousal care of women with cancer, and sons caring for parents. This valuable collection of current research addresses a much neglected but vitally important area of caregiving.
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.
But there's nothing like personal contact, and men are beginning to join and open up even in co-ed caregiver support groups 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 John Radley, "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."
Without my spouse's help, and my son's, we would not be able to provide care for my mom. But they are treated rudely by many people who insist on speaking only to me - even for things that my husband and son could take care of for me, and often, this has caused trouble for me at work. They are treated as if they do not exist by hospital and subacute rehab personnel alike, and it takes me a lot of fighting to tell them that my son and husband provide sometimes even more care than I am able to provide in a given circumstance.
I believe this constant interruption by people who would not talk to the male caregivers at my home, was a huge factor in the amount of demands and pressure put on me at my last job, a job from which I had to resign due to the health crisis it was causing - a major flare up of 5 of my chronic conditions, making life nearly unbearable. This is how companies force people who are caregiving out of work. They make life so miserable by pilinig on responsibilities under that 'other duties as assigned' category, that you have to leave to keep some semblance of health. And I believe they clandestinely find a way to tell prospective employers that you are too wrapped up in your family to be of any use at work. I produced all they asked of me, but it was never enough; there was always something more. Yet my successors, both at my initial job and at the one to which they pressured me to transfer, have more help and fewer responsibilities than I had.
I believe I am not alone as a caregiver forced out of work by a brutal, bullying work environment that saw families as a liability. Everyone there believed a nursing home made life easier until they found out, when Mom was in subacute rehab, how difficult it was for me - it was actually more work than having her at home, except that getting her to and from doctors' offices was simpler. I think an article on that is overdue. I'd be willing to supply you one on my experience if you want.
Posted by: Amy | Monday, December 22, 2008 at 07:47 AM
My name is Matt and I wanted to thank you for your blog and your comments. I spent 3.5 years working in an Alzheimer’s/Long Term Care facility in Utah and I know the challenges some individuals feel with male caregivers. I’ve seen a lot of resources that help families with all related issues. One in particular seems to be a great benefit: http://www.thecaringspace.com
Please pass this link along to anyone you feel could benefit from it.
Posted by: Matt | Wednesday, December 17, 2008 at 08:57 AM
Great post. Support is so important. Vaboomer has a post on male caregivers and lists an online Chat on Dec 4 @ 12 pm EST on "How to Care for Loved Ones without Sacrificing your Well-Being". Read more: http://www.Vaboomer.com
Posted by: Virginia Cornue | Wednesday, December 03, 2008 at 10:22 PM