The ad reads: “You don’t have to be so strong.” “But if I’m not, who will?” Being a caregiver takes a special kind of commitment. We know your strength is super, but you’re still human. Find support for your strength.
It was this full-page ad, appearing in the April AARP Bulletin, that made me pause to reflect on male caregiving. I was struck by the powerful message it is meant to give male caregivers. As I discovered in my research, there are stereotypes, misconceptions, and risks attached to the role.
Family caregiving remains the backbone of the long-term care system here in our country. With changing social norms and demographics, men are increasingly assuming caregiver roles, once the purview of women. According to the National Alliance of Caregivers, about forty-four percent of caregivers in the USA are male. Just a decade ago, less than twenty-five percent of caregivers were men.
I’m finding more and more men in my family and personal social network taking on caregiving responsibilities. My father was the primary caregiver of my mother for years before he passed away. I have a male cousin who became the primary caregiver this year for his father, my uncle, who has dementia. A friend from my former workplace is caring for his mother who has Alzheimer’s. Another friend is looking after his recently widowed mother after his father who had Alzheimer’s passed away. Fifty-four percent of persons visiting my family caregivers’ website are males.
Differing Approaches to the Caregiving Role
My research and an interview with a local neurologist reveal that men employ different strategies to help cope with caregiving tasks. Women tend to be more concerned about the socialization and emotional well-being of their loved ones. Men’s primary concerns focus on having the right doctors and managing medications. Many male caregivers are highly invested in their role. They see it as an extension of their role as provider in the family. Male spouses, especially, view caregiving as a chance to give back to their wives who took care of them for many years.
Some men, however, tend to approach this role as “problem solvers” or “fixers.” Unfortunately, this mentality and approach won’t likely be successful because Alzheimer’s can’t be “fixed,” no matter how hard we try. Instead of attempting to solve “memory problems,” male caregivers can shift to solving how to make sure life is the best it can be by developing an action plan and having a contingency plan in place. This task involves having a palliative care discussion with the physician about specific life and comfort goals for your loved one and how to achieve these goals.
Men may need more education and training of how to be caregivers. They may have to learn new skills such as cooking, cleaning, laundering. If they are caring for a female loved one, they may have to take on unfamiliar personal tasks of bathing, dressing, applying make-up, personal hygiene, fixing hair. These tasks may be uncomfortable to do at times.
The neurologist I spoke to recently gave anecdotal evidence that men also tend to take longer to accept the fact that their loved one has Alzheimer’s. The neurologist noted that, even in the last stages of her disease, the husband was asking about clinical trials for his wife.
The Danger of Loneliness
Boston Globe reporter Billy Baker, wrote an article on March 9, 2017, about the biggest threat facing middle-age men. The threat he wrote about is loneliness. In his research, Baker discovered that disconnecting from friends is bad for long-term health. He was flooded with e-mails and requests to appear on TV and radio shows. It was a courageous article about male loneliness.
A 2010 AARP study showed that one in three Americans, age 45+, are chronically lonely. Loneliness is linked to an increased risk of cardiovascular disease and stroke, as well as the progression of Alzheimer’s. A 2010 University of South Florida study in the journal Stroke found that male caregiving spouses were at a higher risk of stroke, more so than female caregivers, and African-American men most of all.
The Danger of Isolation
Dr. Vivek Murthy, 19th surgeon general of the US, noted that the most prevalent health issue in our country is not cancer, heart disease, or obesity, but isolation. Men tend to depend on their wives for their social support network. When the wife is no longer able to entertain or communicate, this can leave the husband isolated without a supportive community.
Caring for a person with Alzheimer’s will be a challenge unlike anything you’ve ever faced, no matter if you are male or female. You will want to provide the best care possible. As your loved one’s behavior and health deteriorates, and before the symptoms worsen, you need to take into account two very important things: 1) You are not alone and don’t have to care in isolation; and 2) you must take care of yourself if you are to care for your loved one. Let’s take a closer look at each.
You Are Not Alone
In his article, Billy Baker writes that an important step in escaping the trap of male loneliness is to simply and openly admit that you, as a male, want and need real friends. It is important to your health to express your own needs and limitations. Don’t be afraid to ask family members, friends, neighbors, even church members for help. Family and friends can make your life easier to endure the pain of the losses that accompany this disease. Asking for and getting help is a sign of strength! It is a strategy to improve the quality of care you can give.
Most family members want to participate in caring for a loved one, but don’t know what is needed. If possible, assign specific responsibilities to each. Even long-distance family members can reach out by having regular phone contacts with you, sending needed supplies, taking time out to stay for a few days to give you respite and vacation time.
Resources for Support
If you are employed, check what services your employer offers, like flex time, paid or unpaid leave.
Check out the local support groups in your area. Your local Alzheimer’s Association is a good place to start, as this organization sponsors groups in a variety of locations. Memory disorder clinics, hospital neurology departments, senior centers, and churches also offer support programs. Organizations and social service agencies are beginning to offer male-only support groups. Having a place to safely “vent” frustrations and worries is a constructive way to de-stress.
Another source for networking is an on-line support group. Online social networks do meet a certain need for connecting. While these tend to be less personal, there is often good information shared by the participants.
The Alzheimer’s Association has a 24/7 hotline number: 1-800-272-3900. When you call, you get a “live” person at the other end who can answer your questions or provide options of what to do if there is a situation you can’t control.
Bob DeMarco, a former Wall Street executive and CEO of a software and development marketing company, started a website and free online newsletter, “Alzheimer’s Reading Room.” It has over thirty-two thousand+ reader/subscribers. Bob was caregiver for his mother, Dotty, for eight and a half years before her passing. He writes what he discovered during this time. His website features over 5,000 articles which makes it a veritable “treasure-trove” of practical tips and suggestions. Bob is a great role model for male caregivers. When he looks back at his experience caring for his mother, he notes that it was “the most important part of his life.”
You Must Take Care of Yourself
Caring for a loved one with dementia is very stressful, no matter if you are male or female. You aren’t superhuman. Besides looking after yourself, you have taken on the responsibility of caring for another human being who will eventually become unable to care for themselves.
The AARP ad recommends that male caregivers “find support for your strength.” According to Betty J. Kramer, Ph.D., and Edward H. Thompson, Jr., Ph.D., in their book, Men as Caregivers, “Men experience more anxiety in handling the multiple demands of care, while also learning new skills. Men 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.”
Focus on maintaining your own health. Caregiving requires balance: maintaining a healthy diet, getting adequate sleep, establishing a regular exercise routine, and developing a personal plan to cope with the changing demands you face. This plan should include taking time out for yourself to look after your own mental, emotional, spiritual, and social needs.
You are your loved one’s lifeline, their connection to the world. Ask yourself, where would they be without you. Establish lifelines for yourself. It’s never too late!
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The featured ad listed the website AARP.ORG/CAREGIVING, and the phone number to find further information: 1-877-333-5885. Please note this is not a hotline crisis number to receive advice or counseling, but can lead you to local support services.
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To read the full article by Billy Baker, click here: https://www.bostonglobe.com/magazine/2017/03/09/the-biggest-threat-facing-middle-age-men-isn-smoking-obesity-loneliness/k6saC9FnnHQCUbf5mJ8okL/story.html.
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The Men’s Health Network Advisory Board has a “Toolkit” for male caregivers of loved ones with Alzheimer’s. Download it here: http://www.menshealthnetwork.org/library/Alzheimers-caretaker.pdf.
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To check out Bob DeMarco’s website, click here: http://www.alzheimersreadingroom.com/.
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Here are four online communities for caregivers to connect, ask questions, and find support: 1) Alzheimer’s Association – https://www.alzconnected.org/; 2) https://www.caregiving.com/; 3) http://www.caringroad.org/; 4) Family Caregiver Alliance – https://www.caregiver.org/.
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Lotsa Helping Hands is a care calendar website, an easy way to organize meals, transportation, and other help. Check it out here: http://lotsahelpinghands.com/.