Sheehy Explores Caregiving's 'Rough Passages'
Kleyman, Paul, Aging Today
First of two articles
"It's not benign." The oncologist's familiar voice on the telephone would plunge Gail Sheehy and her husband, Clay Felker, "into the whirlpool of fear, denial and confusion." Speaking at the closing session of the recent Aging in America Conference of the National Council on Aging and American Society on Aging (ASA), Sheehy moved the audience with her story of providing care for her husband and her decision to write a book about what she calls the rough passages of family caregiving.
With that phone call in the mid-19905, Sheehy, the bestselling author of 15 books, especially Passages, her 1976 exploration of modem adult development, would find herself coursing down the most difficult passage of all-along with millions of others in the United States. Sheehy, now age 70, recalled, "Within the first few days of sharing the news with family members, Googling different disease sites, tracking down different doctors, following the advice of friends about the best hospitals, and growing dizzy from all of the confusing opinions, it began to dawn on me that I was also aging."
A NEW ROLE
Sheehy said it took a while for her to recognize that she had assumed a new role-family caregiver. "It's a job nobody applies for, nobody gets paid for. It's unexpected; you won't be prepared. Yet the backbone of our broken system is the family caregiver," she stated.
On entering this "uncharted part of the life cycle," Sheehy said she discovered "how people get drafted into this, step by step," not quite realizing that they've taken on a primary role. She observed that the American ordeal of caregiving will increasingly jar the huge boomer generation, who have been shocked to learn that Medicare does not reimburse for most long-term care.
"The system is set up to run you in an exhausting circle," Sheehy said. The route may begin with visits to specialists and include rides to emergency rooms, repeated hospitalizations, rehabilitation, coming home and back around the cycle again, all at astronomical cost.
"Caregiving as a predictable crisis for adults in midlife is a relatively new phenomenon," she said. Although the miracles of medical science and technology prolong life, hospitals send people home "quicker and sicker," she said, adding, "Family members aren't trained to perform 24 hours of care that professionals do in a hospital."
Sheehy criticized the physical toll on caregivers that results from the contradictions of the U.S. Healthcare system. She found her husband's revolving-door admissions to the hospital "one of the most debilitating things for an older adult. Science tells us that i4%-28% of hospitalizations of older adults are preventable. And even a two-to-three day hospitalization contributes to the health decline of many adults."
Worse yet, she said, hospitalizations can spin a "vicious cycle" of illness by often failing to provide preventive measures, such as physical therapy, which the system treats as a frill, even though extended sedentary activity leads to significant loss of muscle mass and reduced blood flow, which can impede cognitive functioning. "How much better and cheaper it would be to offer supportive home and community-based care for the long-term needs of a seriously ill loved one," she stated.
Often, as the acute stage of illness passes and caregivers find themselves coping with what Sheehy calls the longest passage of dementia or other chronic conditions, they are left high and dry in terms of funding support. People who are near poverty "are left in the gap between the illusionary federal poverty level, $10,200 a year, and real poverty level," she said. The basic cost of living is often far more, particularly in urban areas, and it bars needy, sick people from qualifying for Medicaid and other poverty programs.
FOUR CANCER BATTLES
"My husband and I, working together-we're care partners-have battled four separate assaults by cancer," Sheehy confided during her speech. …