Research in the News

Rising number of men are becoming caregivers

By Diane C. Lade
Staff writer
South Florida Sun-Sentinel

June 15, 2003

Dads don't cry. At least not this one. There's too much to do. Get the lawn mowed, Primo Campigotto frets, before it starts raining. Darn, the mower won't start. He fixes it.

His wife, Anne, is bathed. Primo put on a swimsuit and coaxed her into the tub this morning. Now the home health aide is here, so he runs to the grocery store on the way to the rehabilitation center.

Daughter Jeanne Campigotto is coming home soon, after recovering from heart surgery, and her father visits every day. Everyone loves Jeanne at the center, he says proudly. At 56, she's so much younger than the others there, and her warmth is like a cozy room.

Primo also feels a little tired. Anne, as usual, was up all night. The Alzheimer's disease nibbling at her brain prods her awake and sends her looking for things she can't remember.

"Where is that lady who was living in that bedroom there?" she asked Primo, meaning Jeanne, who has lived with them in their Lauderhill home for 14 years while diabetes ate away at her body. In that time, Jeanne has received a kidney transplant from her brother, had a triple heart bypass, survived a collapsed lung and had a vein bypass in one leg.

Dads don't sleep.

"But The Guy Upstairs has been good to me. As long as he's doing that, I can do anything," insists Primo, drawing on his strong Catholic upbringing.

At 82, he's the lifeline both for Anne, 81, and his daughter, a former nun and retired teacher who has no husband or children to care for her.

Dads don't brag. At least not about themselves.

While Primo Campigotto insists he's just doing his job, the social workers at the Broward Homebound Program, who have helped him get services for his family, insist his stamina and devotion are amazing. But maybe the most amazing thing is he's far from alone.

After years of focusing on women as caregivers, researchers have began to realize that there are many men among the 52 million estimated friends or relatives nationwide caring for ill or disabled adults.

Aging Baby Boomers

Like the rest of her colleagues, Betty J. Kramer, a research and associate professor at the University of Wisconsin's School of Social Work, considered caregiving a women's issue. But a few years ago, she noticed men were approaching her after her lectures and seminars.

We need help, too, they told her.

One man, able to handle the most complex portions of his wife's treatments, was seized by panic attacks the minute he stepped into the supermarket. He found the task, new to him, totally overwhelming.

"I was very touched by these guys," said Kramer, who in 2001 helped compile what little research there was on male caregivers into the book Men as Caregivers: Theory, Research and Service Implications (Springer Publishing).

Kramer, and others, are predicting more men will be following in their footsteps as the Baby Boomers age.

In recent history, when families were larger, there almost always was a daughter to step into the traditional role of caring for aging parents or disabled siblings. With today's smaller families, the only person available may be a man.

Women also are more likely to be working today, and men more likely to be asked to share elder care and child care responsibilities. Traditional support structures also have been fractured by divorce.

"The thing that's the most important is to acknowledge the men are there. And they often are doing the same thing as the women caregivers," said gerontologist Sandra Timmermann, director of the MetLife Mature Market Institute, the insurance firm's research and policy arm.

In a 1997 report for the National Alliance for Caregiving, Donna Wagner of Towson University predicted the number of male caregivers would increase over time. When comparing two caregiver surveys from 1987 and 1997, she found the percentage of men had gone up from 25 to 28 percent.

MetLife's first study exclusively on male caregivers, released this month, did an online survey of 1,400 men and women employed at three Fortune 500 companies. Called "Sons at Work," it found that today, one-fourth of the men polled had an elderly relative living with them, almost the same number as women.

Dads don't whine.

"I make her laugh a lot. I tell her jokes and she laughs," says Arturo Ortiz.

His mother, Teresa Ortiz, 89, is relaxing outside their West Palm Beach home with a snack. Arturo has just brought her home from the new Alzheimer's Community Care Spanish-language day center in Greenacres, where she goes five days a week to give him time for shopping and errands.

Arturo is alone, now that his 22-year-old son has moved out. He is father and son to Teresa; she is as dependent on him as his own child was years ago.

He must feed her, to make sure she doesn't throw her food in the trash when he's not looking, and push her in her wheelchair through the parks they visit on nice days. But it's the bathing that's the worst. Male caregivers, who sometimes never had to change diapers or wash a baby, find these tasks especially difficult.

"I'm a man. I don't feel comfortable; she doesn't feel comfortable," Arturo says.

Teresa's disease causes her to see friends and relatives from her native Puerto Rico who are long dead, or Arturo's siblings, who live far away. "She thinks there are kids living here. I tell her, no, Mom, it's just us two," says Arturo, who at 60 is disabled with diabetes and hypertension.

Finding help

When they first moved to this house three years ago, shortly after Teresa was diagnosed, she was so agitated that she would slip out of the house when Arturo was at the store and wander. Arturo once found her blocks away, clinging to a sign post beside a busy street.

Desperate, he tried locking her in the house. It was a police officer, breaking in after he saw Teresa peeping through a window, who finally told Arturo where to go for help.

Although Arturo says he asked his doctor about services for his mother, many men don't take that step. What little research there is consistently shows that male caregivers are far less likely than their female counterparts to go to support groups, call social services or even talk about their struggles.

"Sons at Work" found that while 62 percent of women spoke with their co-workers about their caregiving responsibilities, only 48 percent of men did. When it came to telling a supervisor, only 44 percent of men spoke up, compared to 56 percent of women.

"This leaves corporations unaware the caregiving is a men's issue as well as for women," Timmermann says. "How can human resource departments give them the information they need?"

Neither Alzheimer's Community Care nor the Southeast chapter of the Alzheimer's Association have men-only support groups.

Ellen Brown, the association's vice president of program services, has tried a different strategy with the guys: She doesn't call it a support group. She tells them attendance would be a favor to her.

But many still don't go, or go a few times and don't return.

"They were very lovely people. But I'm very busy," Primo explains. "How can I find the time?"

Care for caregivers

Often, the unrelieved stress proves overwhelming for men. Studies in Kramer's book showed that male caregivers were more likely to have undiagnosed stress-related health problems such as hypertension and depression. According to the Alzheimer's Association, 60 percent of male caregivers will die before the patient.

"You ask a man if he's feeling stressed, he tells you no," Kramer says. "Then he has a heart attack the next week."

Dads don't cry. But daughters do.

"I've learned a lot about love from my mom and dad," Jeanne Campigotto says. There are tears in her eyes as she sits in her wheelchair at the rehabilitation center.

She has watched how her father not only cares for her but also her mother, the one who had been her closest confidant before her illness.

"Dad puts on big band music and she still sometimes stomps her feet," Jeanne says. "That's what her life is today. She's comfortable. She's at home."

Primo's simple wish for Father's Day is that Jeanne will be back in her old bedroom. Oh, and he'd like to sneak out for a quick game of golf the following week. His granddaughter dropped off three big boxes for him last week, with instructions not to open them until today, but he only shrugs.

"I'm happy with my shorts and sneakers," he insists, a dad to the core. "I don't need anything."

Diane C. Lade can be reached at dlade@sun-sentinel.com or 561-243-6618.

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