Caring for Alzheimer’s Patients Brings New Challenges for Some Men

Andy Rachelski became the primary caregiver for his wife of 60 years, Mary Rachelski, after she was diagnosed with Alzheimer’s disease in 2016. Since then, he has picked up many new skills, including soothing her agitation.

When Mary gets confused and upset, Andy holds her hand to comfort her. Mary, now 83, is aware that her brain is not working properly, Andy said. “She’s not in denial,” he said. “It can be pretty scary for her.”

He has also learned to cook and shop for her makeup. “It was very confusing because the cosmetics companies are constantly changing their descriptions and numbers,” said Andy, 81, of Ballwin, Mo.

Andy and Mary Rachelski have been married for 60 years. When Mary was diagnosed with Alzheimer’s in 2016, Andy became her primary caregiver.

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.

Many men are not socialized into providing care, said Michael V. Bueno, an assistant clinical professor of nursing at the University of California at Irvine who researches male caregiving. “When you hear the word ‘caregiver,’ the picture that comes up is always female,” he said.

Many people also have stereotypical notions that men handle the financial and legal aspects of caregiving, and women help with bathing, dressing and feeding, and provide emotional support. Now, more men are taking over those duties, too.

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.

Men now have a greater chance of becoming unpaid caregivers

In 2022, 41 percent of adults providing unpaid adult care were men, according to a Washington Post analysis of the latest American Time Use Survey data. That number is down from about 45 percent in 2019, and 47 percent in 2012. The gender gap in unpaid adult care continues to grow, with women providing most of the care.

Still, “there are a lot of men out there,” said Bueno, who as a teen helped care for two grandmothers with dementia. “They’re just unseen.”

Men now have a greater chance of becoming a caregiver, said Monica Moreno, senior director of care and support at the Alzheimer’s Association. People are living longer, and many men may become caregivers for older relatives such as parents and spouses. More than 6 million people in the United States have Alzheimer’s, and about two-thirds of them are women.

If a couple has adult children, the father can’t always count on a daughter to help, as in the past, because more women work outside the home. Also, “it’s not unlikely that the daughter will move away and the son is closer,” Moreno said.

Gregory Dixon cared for two ailing parents years ago. He would help his mother with bathing and using the toilet. At first, his father was uncomfortable with that but relented because there was no one else to help, said Dixon, 66, who lives in Palmdale, Calif.

When his own wife, Barbara Dixon, 72, was diagnosed with Alzheimer’s in 2020, Gregory mustered the same resolve.

Dementia, however, throws curveballs. Sometimes Barbara rebuffs his help with showering, he said. “She covers up and doesn’t recognize who I am,” Gregory said. “It’s like, ‘You’re not my husband. How dare you! No, I’m not going to get undressed in front of you.’”

To convince her, he must remind her of their wedding and show her pictures.

Many men are often ill-prepared to be caregivers

Dixon had some caregiving experience, but many men — including older baby boomers — are plunged into caregiving with little preparation, Bueno said. “That was not part of their role growing up in that generation,” he said.

Bueno, who has examined how notions of masculinity affect caregiving, said men aren’t socialized to be caregivers. Instead, they are taught to be stoic, independent problem solvers. In his research, he found men who believed that “if anything’s wrong, ‘I just want to fix it,’” he said.

Men, however, can’t fix a loved one’s memory problems by insistently correcting them or trying to reason with them, Bueno said. Alzheimer’s is a progressive, terminal disease.

Rachelski considers himself a rational, logical person. Contradicting his wife to set the facts straight, though, didn’t work, so now he spares her any distress by letting her believe what she wants, he said.

Groups can provide guidance and support

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 his men’s group, Rachelski said he has gained emotional and practical advice from more seasoned caregivers. “These men help me to understand what could happen to Mary,” he said. “It takes the fear out of the unknown and helps me to prepare for the future.”

He sees new members “coming in scared to death,” he said, and some seem unwilling to accept the new reality created by a life-changing diagnosis.

“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 said.

With time, “these guys finally get it,” he said, “that, hey, their job has changed.”

The men commonly mourn the loss of emotional care from their spouses, Rachelski said. “It’s difficult to not have the support of a life partner anymore,” he said.

Women often have wider social networks, which can fade away as they decline. With less support, male caregivers might become withdrawn, lonely and depressed. Some turn to alcohol, he said.

Care for the caregiver

Men may not “admit the stress or depression” related to caregiving, Moreno said.

Men will seek information on how to provide care, Bueno said, but are worse compared with women about asking for help with their own physical and mental well-being. “They’re a little more closed-off,” he said.

Nicole McBride-Gravett, 55, said she comes over two to three times a week to her parents’ home to support her father, Ernest McBride Jr., 85, who is the main caregiver for her mother, Bobbie McBride, 84.

“I’m always on him to keep up with his health, and I come here as more of a respite for him to get out of the house,” McBride-Gravett said. “I make sure he gets out of the room. My mom is bedridden in their bedroom, and he’s kind of like in there all the time.”

Ernest met Bobbie at a friend’s party in 1956. They have been married almost 60 years. Bobbie was diagnosed with Alzheimer’s in 2019.

Ernest usually awakens around 7:30 a.m. and takes Bobbie’s vital signs, he said. He monitors her oxygen level, blood pressure and blood sugar because she has Type 2 diabetes. “Then I clean her up, dress her, change her diaper and change the bedpan,” he said. “Then I go in and fix her breakfast and bring that in. Usually, I have to feed her.”

They have no aides. McBride-Gravett helps to bathe and groom her mother and change the linens.

“I check on my dad, too,” McBride-Gravett said. “I worry about both of them,” she said. She’s read that overtaxed caregivers sometimes die before their loved ones.

Ernest participates in Brother to Brother, a support group for African American men sponsored by Alzheimer’s Los Angeles. He has learned to accept change as a constant while the disease progresses, he said: “You expect anything.”

Male caregivers are such an understudied group that researchers such as Bueno aren’t sure what they need, whether it’s respite care or online forms of support.

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. “I’m juggling challenges,” he said.

A concerned friend helped him connect with Brother to Brother. One man whose wife died this year made several calls on Dixon’s behalf to set up Meals on Wheels deliveries, find a medical social worker and locate respite care at a senior center.

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?”

Unexpected setbacks, though, can dishearten him, such as when he went shopping for Barbara and couldn’t find the type of bras she wanted.

“This is what my wife needs,” he said, “so that’s what I do.”


Published in The Washington Post, 2023
No Comments Yet

Comments are closed

All Content Copyright Katherine Kam, 2024