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Thread: PBS Show Explains How U.S. Fails the Caregivers

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    Senior Member Max's Avatar
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    PBS Show Explains How U.S. Fails the Caregivers

    PBS Show Explains How U.S. Fails the Caregivers
    Saul Friedman

    September 24, 2002

    Like most daughters, my niece Gayle did not always get along with her mother. But now, at 78, mother cannot get along without her fifty-something daughter who is beside her bed or wheelchair in a Midwest nursing home for hours each day, providing comfort and care and company as her mother slowly surrenders to cancer.

    Although she has help from her brother and their grown children, Gayle is among an estimated 54 million Americans who spend an average of 20 hours a week caring for a chronically ill, disabled, elderly or dying loved ones or friends.

    I scheduled the subject of caregiving for this week to recommend a remarkable two-hour program, "And Thou Shalt Honor...," to premiere on PBS (Ch. 13, WNET in New York) at 9 p.m. Oct. 9. The program spares us the usual mawkish superficiality of television and provides us with the reality of how our society treats and fails the nation's caregivers and those they care for in about 23 million American households.

    It is gently narrated by actor Joe Mantegna, a long- distance caregiver for his mother. Mantegna makes this point for 76 million American boomers: "Our generation is the first with more parents to care for than children." And as boomers like Mantegna and Gayle swell the population of the very old, they will depend for their care on the smaller numbers of children in the generation behind them. Caregiving for the elderly looms as a major public health issue.

    Long-term care and caregiving already have become big business, judging by the pitches for gadgets for the elderly. But Dr. Bill Thomas, who founded the Eden Alternative, which brings light to conventional nursing homes, says that making caregiving for our elders an industry "perverts the real value in it...."

    The program dramatizes the ennobling human value as well as the hardships in caregiving, by examining with frankness the experiences of people such as Mary Ann Nation of Franklin, Ohio. She lovingly cares for Harlan, her husband of 32 years who is dying from a brain disease.

    She says, "For things to be easier for me, he has to die. But that's not what I want. I can't prevent him from dying. But I can make the days he has left a little better."

    And Ethelinn Block of Mesa, Ariz., who with humor cajoles her father, Arthur, an Alzheimer's victim, to take his shower, tells how she watches him lest he wanders off or creates a flood by flushing toilet paper rolls down the bowl. Block says, "I'm already giving so much here that I wonder... will there be any of me left?"

    Nearly 90 percent of caregiving takes place in the home, but the American health care non-system discourages families from providing home care for loved ones like Mattie Boykin of Atlanta, who raised nine children by cleaning houses. Frail and mentally impaired by a stroke, she spends four months each at the homes of three of her children. But when it's the turn of daughter, Gladys, Mattie must spend her days at the KFC restaurant her daughter manages.

    Like most of the working poor, Gladys can't afford adult day care for her mother, and there are few government programs to help. Medicare, which won't pay for prescription drugs for the aged unless they're in nursing homes, grudgingly provides little home care. And Medicaid won't pay for home care, except in a few states such as New York.

    Most families struggle to give care at home, but many have little choice but to use nursing homes and Medicaid. There are 1.7 million Americans in nursing institutions, a population expected to triple in a decade. And if nursing homes struggle against a dismal reputation, as the program notes, it's largely because residents are "dependent on the kindness of underpaid and overworked strangers."

    One such "stranger," Mary Alice Wadley, a certified nurse's assistant who works the night shift in a Miami nursing home for less than $10 an hour, says, "We do things that nobody else wants to do," which she explains in explicit detail. One night, she recalls, she held a patient's hand until he died near dawn, because "I didn't want him to die alone."

    As the program notes, caregiving provokes a torrent of conflicting emotions for the caregiver and care-recipient - guilt, hopelessness, depression, the fear of dying and the fear of not dying, thoughts of suicide, anger, loneliness, exhaustion and worry over financial burdens. But none had regrets.

    In most cities, volunteers and private groups offer respite programs to relieve caregivers, at least for a few hours a day.

    And my CPA guru, Ed Slott of Rockville Centre, says caregiving families should take advantage of tax credits, or deductions for the care they give or the medical expenses they pay for loved ones living in their households.

    Accompanying the television program, Rodale Press is publishing "And Thou Shalt Honor... a Caregivers Companion," by Beth Witrogen McLeod with tips and names and phone numbers of helpful organizations. New York City publishes "Caring," a guide in English, Chinese, Russian and Spanish for caregivers helping with victims of Alzheimer's - it's free when you call 212-442-1111. And it would be $20 well spent if you subscribed to the invaluable monthly Caregiver Assistance News, from the New York State Coalition for the Aging, 518-465-0641.

    Mantegna voices the hope for a national program to help the family caregiver and provide a decent wage for the nursing home worker to whom we entrust our loved ones. After all, "and thou shalt honor ..." is a society's responsibility.
    Copyright © 2002, Newsday, Inc.

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    "It was once written "To thine own self be true". But how do we know who we really are? Every man must confront the monster within himself, if he is ever to find peace without. .." Outer Limits(Monster)



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    Special aims to heighten caring

    Special aims to heighten caring

    A two-hour PBS documentary scheduled for broadcast Oct. 9 will explore long-term care giving and the experiences of more than 30 million Americans who are providing care for elderly and disabled family members.

    The film And Thou Shalt Honor ... Caring for Our Aging Parents, Spouses and Friends is PBS' first major initiative on care giving, a topic the network refers to as "an emerging health-care issue of staggering proportions." The documentary also is part of a nationwide outreach program that includes a Web site (www.thoushalthonor.com) and resource book, The Caregiver's Companion (Rodale Press, 2002).

    Filmed throughout the country, the program tells the stories of more than a dozen American caregivers. Their experiences make clear that today's longer life spans come at a heavy cost to people who step up to care for ailing parents, spouses, friends, relatives or neighbors. Its creators hope the special will illuminate the impact of current public policy, insurance reimbursement practices and nursing home standards on the quality of care that is affordable and available.

    "One of the main purposes of the program is to bring more attention and public awareness to care giving," says Gail Gibson Hunt, executive director of the National Alliance for Caregiving in Washington, D.C., who served as technical adviser for the project. "One-quarter of all U.S. households deal with care giving currently, and those numbers are increasing."

    Little government assistance is available to those who keep their ailing elders at home. Jerry Cohen, a California caregiver featured in the documentary, is watching his life savings dwindle as he cares for his wife, Harriet. If he put her in a nursing home, Medicaid would cover much of the expense, but as long as she remains at home, they get nothing.

    "It just doesn't make any sense," he says. "Any rational person can realize a home environment with a caregiver is best."


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    "It was once written "To thine own self be true". But how do we know who we really are? Every man must confront the monster within himself, if he is ever to find peace without. .." Outer Limits(Monster)



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