When Men Become Caregivers for Loved Ones with Alzheimer’s and Other Illnesses, They Have to Learn New Skills Fast
When you hear the word “family caregiver,” is it typically a man or a woman whose image comes to mind? It’s true that most family caregivers are women, roughly 60 percent based on some estimates. But that leaves millions of men who have been thrust into roles for which they are generally unprepared. How do these men, many of them aging husbands caring for an infirm spouse, cope with the unique demands of being a caregiver? And what support is available to them?
We found some interesting answers in this recent article in the Washington Post, reported by Katherine Kam. Her article sheds light on an often-overlooked phenomenon – the male caregiver – who has found himself struggling to master both the physically demanding aspects of caregiving as well as then “softer skills” of empathy and patience. Kam’s article is a compelling read, reminding us that the burden of being a caregiver for a loved one is not gender specific.
Calming, Cooking, Even Shopping for Make-Up
Kam begins her Washington Post article with the story of the Rachelski family in Missouri: Andy, 81, and his wife of 60 years, Mary. Mary is 83 and was diagnosed with Alzheimer’s in 2016. At that time, Andy stepped into a role he had never been in before: that of primary caregiver.
Mary is aware that her brain is not working properly, and Andy has had to learn how to soothe her agitation, holding her hand when she gets confused or upset. “She’s not in denial,” he says. “It can be pretty scary for her.”
But along with learning to be a comforter for Mary, Andy has also had to pick up new skills like cooking and shopping for Mary’s favorite makeup, something he finds challenging because cosmetics companies change up their descriptions and product numbers so often. (We’re sure most men can relate.) This has put Andy, like many older peers, deep into uncharted territory.
Kam writes, “Caring for a loved one with a serious illness can be daunting for anyone. For some men, especially those who are older, the transition can also be unfamiliar and jarring.”
Men Generally Not Socialized as Care Providers
Culturally, many men are not socialized into caregiving. This is the main field of study for Michael V. Bueno, a researcher and clinical professor of nursing at the University of California.
“When you hear the word ‘caregiver,’” Bueno points out, “the picture that comes up is always female.” Much of the issue, according to Bueno, is due to stereotyping. Many assume that men will handle the financial, legal aspects of caregiving, but that women do the hands-on tasks like bathing, dressing, and feeding, and provide emotional comfort, too. But that is changing, and quite rapidly.
Kam writes, “There are many ways to meet the challenges of caregiving, regardless of gender. Bueno, however, has seen some common pitfalls among male caregivers. Some adopt a ‘fix it’ mentality with Alzheimer’s, a progressive and incurable disease, rather than learning to accept the inevitable changes. In time, many men discover that it’s more effective to respond to a loved one’s emotions instead of trying to reason with them. Men also must be mindful of their own well-being, experts and some male caregivers said, as caregiving can exact a steep toll.”
For Men, Odds of Becoming Unpaid Caregivers Are Increasing
According to the Bureau of Labor Statistics, the numbers tell an incomplete story about the number of men who are becoming unpaid adult carers. The stats over the last few years have hovered around 45 percent male and 55 percent female caregivers, and that gender gap continues to grow, with women providing most of the care.
However, with that said, “there are a lot of men out there,” says Bueno, who himself helped care for two grandmothers with dementia as a teen. “They’re just unseen.”
Monica Moreno, senior director of care and support at the Alzheimer’s Association, says that men now have a greater chance of becoming caregivers, thanks to longer lifespans. In addition, the odds have increased of men needing to care for both aging parents and spouses, since more than 6 million people in the United States have Alzheimer’s and about two-thirds of them are women.
Cultural shifts make a big difference, too, says Moreno. Unlike the past, women are working outside of the home more, meaning an adult daughter can’t always be counted on to help her father with the caregiving. And sometimes the adult son is closer than the daughter, geographically.
Most Men Are “Plunged into Caregiving” Unprepared
Gregory Dixon, 66, has experienced both sides of the “sandwich” as a caregiver: he cared for his ailing parents years ago, and now he cares for his wife, Barbara, who was diagnosed with Alzheimer’s in 2017. This put Dixon at a slight advantage—he had had some experience with caregiving previously—but most men his age are plunged into caregiving with no preparation and very little warning.
Bueno believes that this especially comes as a shock for baby boomer men, because most of the time they were not raised or socialized with any indication that they would have to learn how to fit that role, someday. “Instead, they are taught to be stoic, independent problem solvers,” he said. If there’s anything wrong, Bueno found in his research, men are taught that they need to fix it.
“Men, however, can’t fix a loved one’s memory problems by insistently correcting them or trying to reason with them,” Bueno adds. “Alzheimer’s is a progressive, terminal disease.” So far there is no “fix” to be found.
This is something that Andy Rachelski had to learn very early in his caregiving for Mary. He considers himself a logical, rational person. But contradicting his wife to set the facts straight simply didn’t work. It spares her distress to let her believe whatever she wants, he said.
Support Groups Can Provide Men with Guidance
For Rachelski, support was and is paramount. Kam writes, “Rachelski acquired caregiving knowledge from support groups, he said, including an all-male one sponsored by the Alzheimer’s Association. The organization has general support groups across the country, with men’s groups in 12 to 15 states, some of them online. There is also a 24/7 helpline at 800-272-3900, where callers can find information and support.”
In these men’s groups, Rachelski was able to gain emotional and practical advice from more seasoned caregivers. “These men help me to understand what could happen to Mary,” he says. “It takes the fear out of the unknown and helps me to prepare for the future.”
In turn, he has been able to pass on his wisdom to the new members, who come in “scared to death.”
“The guys that show up for the first time in the men’s group, it’s like, ‘She’s taking me away from my fishing. I’ve now got to do this other stuff that I didn’t really want to do,’” Andy says.
With time, “these guys finally get it,” he says, “that, hey, their job has changed.”
This grieving process for these men also comes with mourning the loss of emotional care from their spouses, who are no longer able to provide it. And since women often have wider social networks that fade away as they decline, male caregivers may find themselves withdrawn, lonely, and depressed without extra support. Substance abuse can be a real issue.
Moreno says that these men might not admit to the stress or depression they’re feeling, while Bueno adds that men may seek out information about the caregiving process but are less likely to ask for actual physical or emotional help for themselves. As a general rule, men may not be as forthright as women when asking for help and support in their caregiving, so offers of aid need to be clear, intentional, and instigated by the outside help.
Needs of Male Caregivers Not Well Understood
The field of male caregivers is still very unstudied, something that Bueno and others like him are trying to remedy. But even so, there aren’t any easy answers yet about what these men truly need.
Kam explains, “Caregiving often takes a physical toll. Dixon has suffered sleep deprivation from waking at night to clean up incontinence accidents. He’s trying to keep his wife mobile enough to delay a knee replacement for her, while managing his own sleep apnea and other pressing health problems.”
Because of this, a concerned friend helped him to connect with Brother to Brother, a support group for African American men sponsored by Alzheimer’s Los Angeles. Another friend helped him to set up Meals on Wheels deliveries, find a medical social worker, and locate respite care nearby.
Dixon also relied on his former military background to find more support. He said he asks himself: “Do I have all the resources? What other additional information do I need? Who can I contact? Who can point me in the right direction?”
Despite all of the challenges and unexpected setbacks, Dixon continues on. “This is what my wife needs,” he says, “so that’s what I do.”
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(originally reported at www.washingtonpost.com)