While bathing and dressing her disabled husband, Harlan, Mary Ann Nation often remembers her wedding day 32 years ago. "When I was 18 and standing before that judge ... I didn't say to myself, 'Oh ... this is for life, in sickness and health, but it is," she said. "It's sickness and health, his and mine. You don't rewrite that."
Nation quit her job to care for Harlan, who lost his ability to speak and move after contracting a rare brain virus three years ago. The work is "lonely and it's hard," she said. "What wears you down is there's only one way out of it, for Harlan to die. But that's not my goal.... That's not what I want."
It's a predicament shared by all the caregivers in the wrenching, two-hour documentary, "And Thou Shalt Honor: Caring for Our Aging Parents, Spouses and Friends," to air on KCET Oct. 9. Produced and directed by Harry Wiland and Dale Bell, the film explores the rewards and dilemmas faced by the estimated 30 million Americans who care for disabled loved ones.
"It's part of a growing healthcare crisis," Bell said during a Journal interview. "Technology allows us to live longer, but it costs more to keep us alive."
"The aging of the Baby Boomers will cause the over-65 population to double in 20 years," Wiland added. "The impact will be costlier than terrorist attacks on this country."
The costs are already evident to 83-year-old Jerry Cohen, a Jewish retiree interviewed in the film. When Cohen's wife, Harriet, recently suffered a stroke, he was appalled that her rehabilitation hospital employed only one caretaker per 13 patients. He brought her home but found that the expenses soon caused his life savings to dwindle from $110,000 to $40,000.
A distraught Cohen turned to Janet Morris of Bet Tzedek Legal Services of Los Angeles, who said Medicaid would pick up the tab if he placed Harriet in a residential facility. "Being a caregiver at home means you're not eligible for anything," she warned. "Unfortunately, the way the system works there's an incentive toward institutionalization. The people who are caregivers at home [are] forgotten."
Never mind that 80 percent of caregiving is done at home, where costs are cheapest; or that the nursing home is "a really fouled up ... antiquated factory system," Dr. Bill Thomas says in the film.
Cohen, for his part, is perplexed: "It just doesn't make any sense," he said.
Wiland and Bell decided to make the documentary because the rules didn't make sense to them, either. Wiland, a Jew from Brooklyn, and Bell, a non-Jew from Westchester County, N.Y., have personal experience: both served as long-distance caregivers for their late parents.
For four years in the 1990s, Wiland, 58, flew to Miami every month to supervise his father, an Alzheimer's patient.
Bell, 64, scrambled to raise four children while constantly replacing home health care workers for his alcoholic mother in Houston. "I don't think many of them lasted more than a month," he said. "Eventually the booze and cigarettes got to my mother." The once glamorous model suffered strokes, developed emphysema and, by the mid-1990s, had to be placed in a nursing home. "I had to pack up all her belongings and send them to family members," Bell said, ruefully. "My mother cried that day."
After reading a 1999 New York Times story on geriatric care management, the filmmakers decided to make a documentary to help others weather similar crises. They envisioned a movie accompanied by an interactive Web site and a book to offer real-world solutions to caregiving problems (see sidebar). They raised a $2.4 million budget, a significant percentage from Jewish philanthropies such as the Jewish Healthcare Foundation. A 35-member advisory board helped them find diverse interviewees from Los Angeles to Pittsburgh.
One of them, Mattie Boykin, raised nine children by cleaning houses and cooking in government commissaries in Atlanta. When a stroke left her mentally and physically impaired in 1996, three of her children began alternating four-months shifts to care for her. Boykin's daughter, Gladys, a single mother who manages a Kentucky Fried Chicken, can't afford home care; so when Boykin stays with her, the great-grandmother spends all day, every day, sitting by herself in the fast food restaurant. In one of the most heartbreaking moments in the movie, the camera zooms out to reveal Boykin alone at a table, ignored by the lunch crowd.
In Tucson, the camera's unflinching eye follows George Mairs as he lifts his wife, Nancy, out of bed, places her in her wheelchair, gives her a shower, combs her hair and applies body cream. "If I want to make things easy ... for everyone, I should just die. But having George participate in my care calls me into life," said Nancy, who has multiple sclerosis. "It said, 'Despite your limitations, you belong here with us, and we're willing to participate in the labor it takes."
Bell, for his part, was moved to tears behind the camera. "It was a sharing of the body and of the soul," he said. "I've never achieved this kind of intimacy in another film project."
Indications that one may need to intervene in a loved one's care, from "And Thou Shalt Honor, The Caregiver's Companion" (Rodale Press, $24.95) a how-to book edited by Pulitzer Prize nominee Beth Witrogen McLeod:
- appreciable weight loss or gain
- sudden paranoia, combativeness,
- aggression or hallucinations
- disturbing changes in attitude and self-esteem
- a noticeable decline in hygiene and grooming
- excuses for skipping routine tasks like
- going to the doctor, the barber or the grocery store
- lack of interest in friends, hobbies and activities
- social isolation
- unpaid bills or notices about utilities
- being shut off
- unsafe behaviors such as leaving
- food burning on the stove
- frequent falls
- frequent memory lapses
- getting lost on familiar, well-traveled routes
To order the book or the videotape of the documentary, "And Thou Shalt Honor: Caring for Our Aging Parents, Spouses and Friends," call Wiland-Bell Productions at (310) 202-7730 or go to the project's interactive Web site at www.thoushalthonor.org. While visiting the site, you can also type in your zip code to access information about caregiving resources in your area. -- NP
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