“We have to respect him – he’s our grandfather,” says a teenage boy named Nick. And Brittany, his younger sister, fighting back tears, adds: “I’m just happy he’s alive.”
The grandfather, Arthur Block, is fortunate to receive care from his daughter, Ethelinn, and other members of his extended family. That makes it possible for him stay at home despite the dementia from which he suffers.
Ethelinn talks gently with her father, explaining to him how he forgets. When he asks for an example, she says: “Sometimes you forget mom died.” His reply must have astonished her: “Maybe I want to.”
These people are among many caregivers and their loved ones featured in “And Thou Shalt Honor,” a documentary to be shown next week on public television. Channel 2 in Boston plans to run it first on Wednesday, October 9, at 9 p.m., with several repeats on Channel 44. The program’s portrayal of older and younger people and their caregivers struck me for its human beauty and often brought me close to tears.
Joe Mantegna, the middle aged actor, serves as the program’s host. He introduces himself as a caregiver, like every one in four of Americans. He adds: “Our generation is the first that has more parents to care for than children.”
But parents are not the only ones in need of care. I will not soon forget William and Marisol Deutsch, a relatively young couple who, with exuberant feeling, celebrated their marriage on a yacht off the island of Jamaica only one-and-a-half years before. When we see them, he, a physician, has been discovered to have early onset Alzheimer’s disease. Of her dear husband, Marisol says: “It’s hard to see the person you love not functioning the way they should.”
It is affecting to see Gerry Cohen, age 83, of Los Angeles taking care of his incapacitated wife. Of her he says, “I love her more now” and adds, “I want her at home, giving her the best of care at home.” And, in response, speaking haltingly, she says, “I think he’s the greatest thing on earth.”
Professional caregivers also appear in this program, fortunately because the public needs to know how shockingly low are the wages they receive for often extremely difficult work. Many of them are women of color, scraping by in the effort to survive financially.
Mary Ann Wadley, a nurse’s aide, has worked in a nursing home for 28 years for pay that she calls “terrible.” She says about her work: “We do things that nobody else is going to want to do.”
A home health worker in New York, Gail Sims, reports of the people she visits: “There are a lot of them that will abuse you.” But that does not stop her from cherishing them. Nor does it stop Mary Ann Wadley from caring for her patients: “Sometimes you love the bad ones,” says this heroic black woman, “because you can’t help it.”
Ms. Wadley also has been the only person present when patients die. Of one woman, she says: “I held her hand for two hours, tears running down my face.” And she repeats as if it were a mantra: “I’m a care giver.”
Mary Ann Nation of Franklin, Ohio, is another family caregiver. Her husband, when well, used to be rather unresponsive to her and their marriage was cold. But, through helping him survive each day in his disability, she says: “I have learned more about him in the past two years than in the previous 33.”
Mary Ann recognizes that she cannot prevent her husband from dying but, she affirms, “I can make the days of his life better.” Like many others she says of institutional care: “Putting him in a nursing home is not an option.”
To Dr. William Thomas, creator of the “Eden Alternative,” nursing homes are the enemy. “My whole passion is pulling the plug on nursing homes,” he says. About the long term care system in general, he uses graphic imagery: “It makes me want to throw up.”
For his institutional reform, he has four principles: 1. Treat the staff the way you want them to treat the elders; 2. Bring back decision-making to the elders; 3. Bring children and animals into these residences and grow gardens; 4. Develop a commitment to the ongoing growth of the people.
Thus far, he claims, 237 nursing homes have adopted his Eden Alternative.
Many other people in this television documentary display beautiful tenderness toward the people they care for. Everyone admits it’s difficult and sometimes they feel close to the breaking point. But it’s heartwarming to see so much caring and love in action across this country.
Most caregivers would not use the religious language of Rev.Lois Knutson, a Lutheran pastor in Minnesota, but hers words capture some of the spirit behind their loving actions. “I feel honored to be invited on to the holy ground of people’s lives,” she says of her ministry to elders.
“And Thou Shalt Honor” itself does honor to caregivers.
Richard Griffin