Co-authored by Teepa Snow, Dementia caregiving expert
“Our culture still sees male caregiving as a novelty,” states Paul Spencer Scott, in an excellent article on caring.com. However, the number of male caregivers, including Alzheimer’s caregivers, is steadily increasing, as documented in an article on Forbes.com. That article reports that between 1996 and 2011, “The percentage of men among adults caring for a family member with Alzheimer’s disease or dementia more than doubled, to 40% from 19%.”
Despite the rise in the number of male caregivers, relatively little has been written about them. Most of the literature focuses on the role of women as caregivers. Male caregivers face some unique challenges. Nine are discussed in Scott’s article. We list the five most important (in our opinion) below and elaborate on each.
For this article, we also interviewed Martin Schreiber, a former Governor of Wisconsin. Marty, as he likes to be called, is currently in his 12th year of caring for his wife, Elaine, who has Alzheimer’s.
Marty has written a book, ‘My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver,’ with Cathy Breitenbucher, an award-winning journalist and author. The book describes his experiences caring for his wife. Marty is a sought-after speaker nationwide, and has become Wisconsin’s most visible spokesperson on behalf of Alzheimer’s caregivers.
The five topics we selected are:
1. Men tend to be less socially prepared for the [caregiver] role. In our society, men are still viewed largely as providers; women, as nurturers. A Fact Sheet on male caregivers states that, “Male family caregivers aren’t as comfortable providing personal care as women are.” For example, men were usually not involved in child-rearing and are not used to dealing with bodily fluids. Male caregivers may need extra guidance and assistance from a third party when continence and personal hygiene issues are happening with regularity.
Marty’s Experience: Marty told me society didn’t prepare him at all to become a caregiver. And when he did begin to care for his wife, he felt his manhood was challenged. He felt he should be able to do it all. And that if he couldn’t, it would have been a sign of weakness. He also told me he was relieved that in the early stages, at least, he didn’t have to provide any physical care.
2. Men tend to be less likely to ask for help. Scott reports that only 20 percent of callers to the New York City’s Alzheimer’s Association helpline are men, despite the fact that 40% of Alzheimer’s caregivers are men.
Marty’s Experience: Marty’s personal opinion is that men are not cut out to ask for help. He didn’t ask for help until his friends noticed that his physical and mental health was suffering. They told him that he had to do something for himself.
He finally started seeing a counselor (and he’s still seeing her – six years later), who was especially helpful because she’d had personal experience as an Alzheimer’s caregiver.
He also began asking his friends to take Elaine out for drives so he could get some respite.
3. Men tend to avoid talking about their feelings. Men are less likely to join support groups. They prefer to engage in some social/physical activity, such as bowling for example, during which they may talk about their caregiving experiences.
Marty’s Experience: Marty never did go to a support group. He says that even today, he just doesn’t think he can sit in a group and share his most intimate feelings.
4. Men are skimpier on self-care. An article in the New York Times reports on a study that found “Widowers [in general] have a higher incidence of mental and physical illness, disabilities, death and suicide than widows.” The same applies to men caring for a loved one who has Alzheimer’s. This is most likely due, in part, to the fact that they focus exclusively on the person they’re caring for and ignore their own health.
Additionally, they may be learning about a host of new home care skills as well. Shopping, cooking, cleaning, laundry, and maintaining the family social network may all be on the new care agenda, and can easy become overwhelming when added to the personal care mix. Recognition, by others, that this is all different and new could possibly change the dynamics, if the need for new learning in all these areas was acknowledged as both time and energy consuming and worth supporting in an effective way.
Marty’s Experience: Marty said he withdrew from social interactions, stopped going to the gym, and didn’t sleep well. He also became clinically depressed and began having serious trouble breathing and walking. He ended up in the hospital, where a number of tests were conducted. The doctors finally decided that some of his symptoms were due to caregiver stress.
5. Men tend to view caregiving as a problem to be solved. Men are used to taking care of things, not peoples’ emotions. When they fix a problem they expect it to stay fixed. For example, a man may help his wife get dressed, but soon finds she undressed herself and went back to bed.
The use of logic and checklists can prove more frustrating than helpful when the person who is being supported doesn’t work that way. Recognizing differences and finding the right additional partner to help could be the fix that actually makes the biggest and best difference in the long run.
Marty’s Experience: Marty said he could really relate to expecting problems to stay fixed. Once he was out of town with Elaine and he had packed their bags. When they were ready to leave for the airport, he discovered she had unpacked the bags and put everything away. He became quite angry. Since he had to pack again, they were almost late for their flight home.
Marty’s Advice to Male Alzheimer’s Caregiver: I asked Marty what advice he would give to other male caregivers. He gave me the following answer:
1. Get help. You can’t do it alone.
2. Learn about the disease. If Alzheimer’s is bad – ignorance of it is worse.
3. Accept the fact that the illness isn’t going to go away. Instead of waiting for the storm to pass, learn how to dance in the rain.
We add one more consideration to the five listed above. There are special circumstances in the LGBT community. These caregivers may become profoundly isolated, because they may not feel accepted by society in general, and they may also feel uncomfortable and unaccepted by members of traditional support groups. Creating spaces and places of inclusion and appreciation for this group of male care partners will become more and more important as the baby boomers move into the high risk group.
In conclusion, there are numerous challenges unique to male Alzheimer’s caregivers. Hopefully, in the future, additional research into these complex and unique issues will be conducted, and more articles will be written specifically to help these valiant men in their steadfast dedication to those for whom they care.
Marie Marley is the award-winning author of ‘Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy.’ Caregivers say it helped them a lot. Former caregivers say they wish they’d had it when they were caregivers. She is also co-author (with Daniel C. Potts, MD, FAAN) of ‘Finding Joy in Alzheimer’s: New Hope for Caregivers. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s caregivers.
Teepa Snow (TeepaSnow.com) is one of America’s leading educators on dementia. Working as a Registered Occupational Therapist for more than 30 years, her wealth of experience led her to develop Positive Approach® to Care techniques and training models that now are used by families and professionals working or living with dementia or other brain changes throughout the world. She also developed the Gems model, to be utilized as a means to improve interaction and appreciation of individuals.
This article was originally published on the Alzheimer’s Reading Room. http://www.alzheimersreadingroom.com/2017/05/what-are-unique-challenges-men-face-as-alzheimers-caregiver.html