This article from a recent AARP Bulletin Today is about male caregivers. The seven tips for male caregivers at the bottom of the article certainly apply to all caregivers. John Young, president of the LBDA (Lewy Body Dementia Association) Board, is mentioned in the article. He attended our December '08 support group meeting in San Mateo, CA. He told many stories about caring for his wife with LBD.
http://bulletin.aarp.org/yourhealth/car ... iving.html
(note that the online article has links on some of the text)
The New Face of Caregiving: Male Caregivers
By: Cathie Gandel
Source: AARP Bulletin Today
January 23, 2009
When his wife, Chris, was diagnosed with breast cancer on their 19th wedding anniversary, Dave Balch suddenly found himself with two full-time jobs: running his home-based software business and taking care of her. âI donât know how I managed everything,â says the 60-year-old from Twin Peaks, Calif., whose wife continues to fight recurrences of the disease six years later. âBut you do what you have to do.â
Each year, more Americans are finding themselves in a similar situationâand challenging preconceived ideas about men and caregiving.
âPeople think that male caregiving means that the guy calls home from the job and asks his wife how his mom is doing,â says Donna Wagner, professor of gerontology at Towson University in Towson, Md. âThatâs not true at all.â
A 1997 survey conducted by AARP and the National Alliance for Caregiving, a research and advocacy coalition, found that 27 percent of caregivers were men. By the 2004 update, that figure was almost 40 percent, with more male caregivers (60 percent) working full time than women caregivers (41 percent). Among the reasons for the increase: smaller families, longer life spans, more women working outside the home and greater geographic separation of family members.
While male caretakers face many of the same challenges as their female counterpartsâincluding depression, stress, exhaustion and reduced personal timeâthey approach their caretaking role differently, say some experts.
âMen approach caregiving as a form of work, a series of tasks that needs to be accomplished,â says Edward H. Thompson, coeditor of Men as Caregivers and director of gerontology studies at Holy Cross College in Worcester, Mass. âI donât mean that to sound harsh. Itâs just the way they look at things.â
Because they are used to delegating, they are more comfortable seeking outside help when they need it, says Richard Russell, associate professor of social work at the State University of New Yorkâs College at Brockport.
Donald Vaughan, a 51-year-old freelance writer in Raleigh, N.C., has an aide come in three times a week to bathe and shave his father. âItâs worth every penny I pay,â he says.
But despite feeling isolated, men tend not to seek help for themselves, at least not from traditional support groups. Instead, some forge their own connections. In Rochester, N.Y., some fellow caregivers meet once a week for breakfast. âThe men talk about sports, politics and grandchildren,â Russell says. âThey donât mention caregiving. Itâs as if they have made a pact that this is their time to be just regular guys.â
Men also try not to bring their caregiving situation into the workplace. They not only have been socialized to keep things close to the vest, they also perceive a stigma associated with taking time off for caregiving responsibilitiesâand sometimes a lack of understanding from employers.
John Young experienced that feeling firsthand. The 55-year-old nursed his late wife through Lewy body dementia, a disease that combines the mental deterioration of Alzheimerâs disease with the physical disability of Parkinsonâs disease. When his wife became ill, Young was teaching in a police academy in a Houston suburb. At first she was able to stay on her own while he worked, but one day she called with an emergency and he had to rush home. âWhen I returned, my boss called me in and asked, âHow much longer does she have?â?â Young says. âI knew it was time to go.â
Even those who work at home have trouble juggling responsibilities. âTaking care of my dad has had such a dramatic impact on my life,â Vaughan says. âOne part of my brain is always on my father. And my time is nickel-and-dimed throughout the day. Itâs hard to get a long period when I can do my work.â He interrupts his writing intermittently to make sure his father drinks enough fluids and walks up and down the hallway for exercise.
âThe worst part is the exhaustion,â says Gary Noble, 64, who cares for his wife, who has multiple sclerosis. He also works as a bus driver in Livermore, Calif., and often has split shifts. He may come home at 8:30 p.m. Before he goes to bed at 9:30, he has to cook, clean up and tend to his wifeâs needs. He needs to be up again at 3 a.m. âIâd appreciate just a few hours off sometimes,â he says.
John Carlson, 57, of Woodbury, Minn., takes care of his 88-year-old father, who is in the early stages of Parkinsonâs. âThe most difficult part is having time away from home,â he says. âDad covets my time, as most of his days are spent alone.â
While any relationship may suffer in the caregiving equation, the issues are particularly difficult for those caring for a spouse, says Donna Wagner. Richard Anderson, president of the Well Spouse Association, a nonprofit organization that provides peer support to those caring for a partner with chronic illness or disability, agrees. He took care of his late wife, who had an autoimmune disease, for 29 of their 31 years of marriage.
âSpousal caregivers are different because of the intimacy of the relationship,â he says. âItâs hard to have sexual feelings toward your partner if you have to deal with incontinence and other personal issues.â
Despite the difficulties these men face, there is some good news. âMy wife and I spend a lot more time together,â says Ray Heron, 57, of Charlottesville, Va., who has been caring for his wife, who has MS, for 10 years.
The caregiving relationship has brought Chris and Dave Balch closer, too. âThis can really put your love for each other to the test,â Chris says. âIn our case, it made it stronger.â
Tips for Male Caregivers
âThere is no manual on this,â says Vaughan, the freelance writer in Raleigh, N.C., who cares for his father. âYou learn day by day.â But here are seven tips passed on by men on the front lines of caregiving.
1. If someone asks what they can do to help, have a list in the back of your mind and tell that person.
2. Have something to look forward toâwhether itâs a big trip or just a rental movie to watch at home. Remind yourself that you will get through this.
3. Acknowledge your emotions. Youâre human, not a robot.
4. Set up a group e-mail to keep family and friends in the loop.
5. If youâre a spousal caregiver, donât put off shared pleasures. If you and your wife always dreamed of going to the Caribbean and the trip is still feasible, do it now.
6. Remember that most of the little issues donât count. Discuss them and find what works for both you and your patient.
7. Learn as much as you can about your patientâs disease, even though it might be scary.
Cathie Gandel is a freelance writer based in New York.