Women bear brunt of elder care

WASHINGTON - Velma Henderson fusses over her mother the way her mother once fussed over her.

She flits around her mother's bed, straightening a blanket, muting the sound on the television so they can talk. She calls her mother "Girlfriend." She tries to lighten the dark mood after a recent blow to her mother's health, recalling the days when her mother left her overheated apartment in Arlington, Virginia, for a jaunt on her electric scooter.

Her 91-year-old mother, Dorothy Warren, says she has no interest in going anywhere.

"I don't want to be here," Warren says in a reedy voice. "I want God to take me. I'm tired of suffering."

It's been like this for months, Henderson said, their banter part of the daily ritual between an aging parent and the adult child who is her caregiver. The role has been an intimate, grueling and sometimes rewarding experience for Velma, who has taken it on herself, although one of her brothers is nearby. (Another brother, who lives in Boston, provides financial help.)

Elder care is a final frontier in the gender wars. More than 65 percent of older people who need long-term care rely solely on family and friends, and most of those caregivers - estimates range from 59 to 75 percent - are women, according to the Family Caregiver Alliance. A recent study by a Princeton University researcher found that daughters step up twice as often as sons, regardless of job status, child-care duties and other variables. The findings suggest that gender, and traditional gender roles, trump all.

Gail Gibson Hunt, chief executive of the National Alliance for Caregiving, said women become caregivers because society expects them to.

"They are still in that role even though they are in the workforce to almost the same extent as men," Hunt said. Studies show that at work, men are even more reluctant than women to discuss their role as caregivers, especially for aging relatives, Hunt said.

The lopsided emotional, mental and financial burdens shouldered by millions of women increase the odds that their health will suffer, research suggests. Seventeen percent of all caregivers say their health worsened because of their duties, and women report higher stress levels than men, according to studies cited by the Family Caregiver Alliance.

Velma Henderson has injured her shoulder, her neck and her wrist while assisting her mother. At times, Velma says, she has felt so preoccupied, helpless and overwhelmed by her caregiving responsibilities that she has trouble concentrating.

Her brother, who also lives in Arlington, said personal problems have interfered with his ability to assist in their mother's care. "I know it's a burden, and I really am so sad I'm not able to do anything to help her out. I know it's a tremendous strain on her," John Henderson said.

Donna Eichelberger, who owns a business in Frederick County, Maryland, that helps older people move into new homes, said her typical client is a middle-aged woman who is making arrangements for an aging parent despite her other duties. Parents, she said, sometimes reinforce this sexism.

"The mother is always making excuses for the son. I see that at all the time," said Eichelberger, 55, who operates Graceful Transitions.

Marla Lahat, executive director of Home Care Partners, based in the District of Columbia, said that of the agency's 200 professional caregivers, only a handful are male. In family caregiving, she sees traditional gender roles play out in the different ways that male and female caregivers approach their duties.

"I do think it's sort of accepted in our society that women do that kind of hands-on care," Lahat said. "Men may be willing to do other sorts of kinds of care. They're not going to bathe" people.

But the picture is changing, albeit very slowly. In 1997, when the National Alliance for Caregiving conducted its first survey of caregivers, 73 percent were women. By 2009, the survey found that 66 percent were women.

That could be because some male baby boomers -who came of age during the modern feminist movement and typically took a more active role than their fathers in child care - appear to be more receptive to elder care, Hunt said. Other experts suggest that some women who are juggling careers could be more inclined to find alternatives.

"There really is a growing group of people who understand work needs to be done differently, life needs to be done differently," said Jessica DeGroot, who founded the Philadelphia-based ThirdPath Institute to advocate for more equitable care-sharing for children and, increasingly, older relatives.

Amy Goyer, who is AARP's family caregiving expert, said that in the United States, change has been guided by the private sector as companies experiment with flextime and other family-friendly policies. But more can be done, she said, particularly to tailor supportive policies and educational programs for men, such as all-male support groups.

A 2011 study by Joan Kahn, a sociology professor at the University of Maryland, also found that the gender gap is not static: Male and female involvement in caregiving changes at various points in their lives, with men approaching retirement more likely to become involved in helping relatives - although admittedly more often for adult children and grandchildren than for aging parents.

Even when men help, women spend as much as 50 percent more time providing care, the Family Caregiver Alliance survey found.

J. Andrew Butler, 64, a PBS employee who takes care of his disabled wife, sees this from the male perspective when he dials into conference calls for a caregiver support group in Fairfax County, Virginia.

"I am usually the only male on the call," he said.

Denise Keehner, who lives in Greenbelt, Maryland, had taken over the primary care of her late father from her brother for several reasons, among them the stairs in her brother's house, which caused problems for their father. But Keehner, who is one of seven children in a close family, also felt that the emotional tensions between the men had built to an intolerable level that wasn't good for either of them.

"My feeling was, he can't really help it," Keehner said of her brother. Their father, Edward Zawitoski, had been chief auditor for NASA and a demanding, larger-than-life presence. "I think my brother seeing him in a diminished capacity created anger, like, 'I really don't want to see my father like this,'" she said.

So Keehner, 58, a retired Environmental Protection Agency official, had her father move in September 2011. She and her partner took care of him until his death two years later.

Her brother, Edward Zawitoski, 55, acknowledged the emotional difficulty he felt caring for a beloved figure in his life. As firstborn son, he had been close to his father, who always singled him out to help around the house.

"Let's go, Ed," his father would say before enlisting his son in a task. When his mother died, she told her son on her deathbed to look after his father, so he did.

"It was very natural for me to take care of him, but when it got to the point where he was deteriorating, it was very difficult for me," Zawitoski said. "It disturbed me. Because he was always there if he had to be."

He added that he felt internally conflicted because of his mother's last wish and only reluctantly relinquished his role to his sister, who he felt was better suited as a caregiver.

"She probably had more patience than I do, because I'm more like my father in some ways," he said.