The Strength Within

For caregivers, Dana Reeve was the public face of their private struggles, drawing attention to their often unheralded role


Life can be so unfair.

That was exactly what John Farley thought yesterday when he heard about Dana Reeve's death. He didn't know the widow of Christopher Reeve, but in a sense he knew her life.

That's because the 40-year-old Eldersburg resident has cared for a seriously ill loved one. He knows the pain of watching a spouse suffer. He knows the occasional feelings of helplessness and the fear of what might come next.

"I hear from friends and family, people I talk to say, `You're a good person. A lot of people would bolt. They'd take off. But you stuck around,'" said Farley, whose 38-year-old wife, Colleen, received a diagnosis of cervical cancer six years ago. "[Dana Reeve] did the same thing. She was an amazing person. I really feel for her. I know what she went through, and I know what her family is going through."

Reeve's death rippled through hospices and hospital rooms yesterday, where patients and caregivers alike lauded how she had put a famous face to a silent ordeal that more and more Americans are going through every year.

"She was probably a role model to a lot of people," said Donna Lewis, manager of the oncology support program at the Greater Baltimore Medical Center. "I've been going into so many patients' rooms today and even the staff, everybody is so devastated."

Lewis said patients, caregivers and hospital staff were all talking about Reeve yesterday and grieving for the 13-year-old son she left behind.

As people live longer, as they survive diseases that might have killed them just a generation ago, and as the health care system increasingly shifts the responsibility of long-term care onto patients and their families, the number of caregivers could triple in the next 25 years, some health experts believe.

During any given year, more than 50 million people are providing care for a chronically ill, disabled or aged family member or friend, according to the National Family Caregivers Association in Kensington. A 2003 Johns Hopkins study found that by 2030, nearly 150 million Americans will have some type of chronic illness calling for home care.

Studies have found that caregivers, while focused on their loved ones' health, often are ne- glecting their own.

Struggling with such intensive needs can take its toll as other studies have shown that caregivers experience higher rates of sleeplessness, back pain, depression and anxiety than noncaregivers.

"Caregivers often suffer from stress-related problems, from heart disease and depression to gastrointestinal illness," said Cass Naugle of the National Alzheimer's Association, Greater Maryland Chapter. "Often, the stress-related illnesses occur after the death of the loved one, especially when the caregiving situation has been long-term, lasting several years."

It's something James Hopkins thinks about often.

Hopkins has been a patient at Gilchrist Center for Hospice Care in Towson since October - just months after his prostate cancer worsened - but it's the effects of his illness on his 69-year-old wife that fill his thoughts.

"She's here all the time," said Hopkins, 75, a former professor of English, drama and theater at Harford Community College who retired to devote his time to painting. "I worry about her."

But even as he urges his wife, Marie, to go home, to rest, to take a moment for herself, she can think of no other job more important than sitting with her husband of 32 years day by day. There is nothing she would rather do than to open the curtains to his room in the morning and split cereal, eggs, bacon and coffee with him while they watch the cardinals and doves eat from a feeder outside.

From preparing his watercolors to changing the dressing on the tube attached to his kidney through his back, Marie Hopkins said that even as she supports him, he lifts her spirits mentally with each shared laugh, memory and experience.

"Someone said to me recently that, `Oh, you really had to put your life on hold,'" Marie Hopkins said. "But I don't feel that way at all. This is my life. I don't know when I've lived so vividly."

Many caregivers have no recognition of their own needs or the resources that are available to lighten their load.

"They think, `I'm not a caregiver; I'm just a good daughter,' or, `I'm just being a dedicated spouse,'" said Jon Radulovic, spokesman for the National Hospice and Palliative Care Organization in Alexandria, Va. "They don't recognize that they're part of this activity that millions are engaged in that often calls for specialized knowledge and support."

Few people have little idea what they're getting into when they begin caring for a relative. About 54 percent of those taking on a loved one 50 years old or older expect their duties to last less than two years. In fact, the average length of care is eight years, with a third of caregivers offering a decade or more, according to Susan Mintz, co-founder and president of the family caregivers association.

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