Support for Spousal Caregivers

By Jonathan Peterson, Los Angeles Times Staff Writer
November 27, 2006

JOE WOLF still remembers his wife, Joanne, as a healthy 18-year-old with long brown hair and a '61 Chevy. They met through a social group at a Presbyterian church. They got married and had two children.

These days, he trims and curls Joanne's hair, because she no longer is able to do it herself. He brushes her teeth. He helps her dress. He cooks, cleans and drives her in a specially equipped van to the gym, where she battles the debilitating effects of two strokes.



"If I was the ill person, I'm sure she would be doing this for me," said Wolf, 65, who retired five years ago from his job as a printing company executive to care for his wife. "She wouldn't just put me in a nursing home and pack me away."

Joanne, 61, whose left side has recovered more than her right, is listening. "I'd be lost without him," she said, as autumn leaves swirled outside their ranch-style home in suburban Pennsylvania. "He's my right-hand man."

Dutiful daughters and nurturing wives have long dominated the ranks of society's caregivers. That, at least, is the stereotype.

Such a view is out of date, healthcare experts say. Both genders, it turns out, are playing a crucial role ” and at significant personal cost ” in providing hands-on care to ailing relatives. Their efforts have emerged as a foundation of the larger U.S. healthcare system, helping family members survive at home and perhaps prolonging their lives.

Among the almost 16 million family helpers who also hold full-time jobs outside the home, for example, men now outnumber women 52% to 48%, according to a study this year by the MetLife Mature Market Institute and the National Alliance for Caregiving.

The big factor behind men's involvement may be the reality that women increasingly have job commitments of their own, experts said. In such cases, men may feel compelled to step in and provide more of the aid. It is also possible that some men view such domestic labors more sympathetically than their fathers or grandfathers did in an earlier era.

"The public perception is that women do all the care-giving. It's totally not true," said Peter S. Arno of the Montefiore Medical Center and Albert Einstein College of Medicine in New York.

Overall, about 30 million family helpers are giving care 20 hours a week, with men providing more than 40%, Arno said, including help with eating, dressing, bathing and using the bathroom. "The fact is that men are doing plenty."

Male and female family members both may pay a price for their devotion. Risks escalate for illness and depression. Efforts to balance demands of care and career can be stressful and sometimes futile.

Anecdotally, however, some wonder whether men pay their own peculiar price, particularly those who labor in isolation and bottle up frustrations.

Betty J. Kramer, co-editor of the book "Men as Caregivers" and a professor of social work at the University of Wisconsin in Madison, recalled her experience guiding male helpers: "In one support group, two men had strokes and one had a heart attack."

In another case, a man was having anxiety attacks, she recalled. On further investigation, it turned out the attacks were prompted by going to the grocery store: "He'd never shopped before," she said.

FOR the baby boom generation, care decisions are becoming an increasingly important part of life. Already, boomers are the major providers of the family help, most commonly assisting an aging parent who is battling Alzheimer's, stroke, Parkinson's disease, multiple sclerosis or other conditions.

Scholars are debating whether greater longevity will add to society's care needs in future years, or whether advances in health will let more people enjoy old age with fewer disabilities. But for millions of people, the responsibility of care has already arrived.

"I just know this is what I'm supposed to do," said Mark Donham, 44, who cares for his wife, Chris, a 50-year-old Alzheimer's patient. "Work is work, but upholding the commitment we made at marriage is absolutely the right thing."

Donham quit his sales job this year. In the new routine, he helps Chris dress ” picking out clothes without buttons to make it easier for her ” drives her around and does most of the housekeeping. Each morning begins with a three-mile hike to Starbucks. "I'm in the role of husband, and then there's the role of caregiver. They start to blend together," he said.

At first, the Portland, Ore., resident tried to hang on to his job. But little problems at home made it hard to stay focused. Such as the time Chris called him at work because one of their cats had run out the door. "She was worried about the cat, and I'm worried about her worried about the cat. It would take my concentration off whatever I was doing," he recalled.

Such unpaid helpers are a pillar of the healthcare system. Arno, who has studied the matter, estimated that it would "conservatively" cost the nation $320 billion a year to pay for such efforts, almost double what the public spends on nursing homes and on paid in-home care.

Family helpers "are the backbone of the long-term care system in this country," said Donna L. Wagner, director of gerontology at Towson University in Maryland and an expert on the economic impact of family care. "Without them we'd have a lot of people who are doing very poorly, and we'd have a lot of increased demand for public services. They're performing a service not only for their family members but for society as well."

To be sure, not every effort is based on altruism alone. Nursing home bills can cost at least $70,000 a year, eating up a lifetime of savings before a patient qualifies for public assistance. In-home care also can be a heavy financial burden.

In California and a handful of other states, low-income households may qualify for modest reimbursement for the family labor.

Yet most care is an unpaid product of gritty dedication and personal priorities. "She took care of the children," Wolf explained. "She raised the kids. Now it was my turn."

NINE years ago, Wolf was on a business trip in Alabama when he received the life-changing news: Joanne, then 51, had a brain aneurysm while taking a shower.

In the days after the episode, Joanne had two strokes. Joe hired a home health aide to care for his wife, but kept his job at Unisource, his printing and marketing firm.

Still, Joanne's illness forced him to alter his hard-charging approach to work. He cut out overnight travel. Instead of holding breakfast meetings, he had to linger by the garage in the morning, waiting for the aide to show up. At the end of the day he would rush home.

Despite his best efforts, Joe's priorities were on a collision course. A painful dinner meeting came to symbolize the dilemma. He wanted to pull together a deal to produce automobile manuals for Chrysler, a potentially "tremendous piece of business." A group of Danish businessmen were ready to provide the recycled paper that Chrysler wanted, but they were considering teaming up with a rival printer for the job.

The foreign business executives came to the United States. Wolf set up a dinner meeting with them so he could sell the deal, arranging for his wife's elderly parents to watch their daughter.

"I'm looking at my watch. It's a quarter to 10 and these people still wanted to talk," he recalled. "They wanted to have after-dinner drinks. And I still have an hour's drive home¦. I was distracted. Sure I was. And they could see it. You're literally trying to speed up a dinner meeting."

A rival printer landed the contract. Less than a year later, at 59, Wolf opted to take early retirement.

"It was a tough decision," he recalled recently. "Where do I employ my time? Do I do something that's totally satisfying to me, or something that could benefit both of us?"

Each year, nearly 400,000 other Americans make a similar decision to retire early to care for a family member, according to a recent study by MetLife and the National Alliance for Caregiving.

Such moves can introduce the helpers to whole new worlds. Earlier in his marriage, Joe Wolf's cooking skills were limited to the weekend grill. Now he takes pride in whipping up healthy meals.

"We don't have pizza for dinner," he said.

These days, the former international dealmaker shops with coupons, sorts wash into whites and colors, keeps the hardwood floor glistening, and tends to the personal care of his wife. "You should have seen the first time I tried to do her hair," he chuckled. "Now I'm a pro at it."

But he hasn't used his golf clubs since 1996, and he no longer plays tennis. The weekend retreat in the Pocono Mountains was sold long ago.

Through a group known as the Well Spouse Assn., Wolf has taken a few excursions, such as a trip to the Chesapeake Bay where harried helpers went for boat rides and a fleeting escape from their duties at home. "It's like going to Disney World," Wolf recalled. "It's a break. It's so small, but it's something you haven't had."

"People tell me, 'Joe, you don't have a life,' " he said of the care efforts. "It's a tour of duty that has no end. It's 24/7."

Yet he takes some satisfaction in the progress of his wife, who had been given a year to live. Once, she had to blink in order to communicate yes and no. Now she speaks clearly. Joanne continues to recover nine years after the strokes, in contrast with similar patients, whose progress typically levels off much sooner.

"She's still young. She still has an opportunity to improve her lifestyle," he said. "And if her lifestyle can be improved, my lifestyle can be improved."

THERE is a scene in Joe Wolf's mind, a goal he is quietly striving for, through all the efforts, all the struggle to move life forward. It is about the future, and it looks something like this: He is rolling Joanne's wheelchair up the ramp into the blue Town & Country van. Her chair's wheels lock into place on the passenger side. He turns the ignition.

Minutes later, they are cruising south on Interstate 95. In the vision, Joanne has regained enough mobility to travel. She can make use of rest stops on the highway. They are escaping the Northern winter, one more couple cheerfully heading to Florida.

"I'm not quite there," Wolf said, "but I think in a year I will be."

 

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