Rockleigh—Alzheimer’s slowly takes away the special memories—as unique as fingerprints—that we share with our family members. As those who have looked after aging parents and grandparents are painfully aware, it is considered a degenerative disease, and while its causes are unknown, its well-understood phases are progressive and can last many years.
According to a new documentary film featuring local residents, people afflicted with the illness most often require a “continuum of care,” which starts out perhaps with a social worker or medical professional visiting the patient at home, and extends to differing degrees of other support: day habilitation, kosher “meals-on-wheels,” assisted living, or longer term care. Their families also are in great need of support.
The film, part of the Visionaries documentary series, describes the experience of five local families dealing with varying stages of the disease as part of a profile of the unique, collaborative approach of the Jewish Home Family, based in Rockleigh, New Jersey.
Narrated by veteran film and television actor Sam Waterston, Visionaries is a non-profit documentary film series made by Massachusetts-based Bill Mosher and Elizabeth Turner for public television. It is presented by WGBH-Boston and distributed to 140 public television stations around the country. Funding for the documentary was provided by both national supporters and by local members of the community in Bergen County, who care passionately about giving this issue a national stage.
The Alzheimer’s narrative is a personal one for filmmaker Mosher he told JLBC. “When my mother came to live with us on Cape Cod, the only help available for us was private nursing care. There was and remains only a patchwork of services with home care, day care, support groups, nursing care, all separate and unconnected to each other,” he said.
Mosher added that his team looked at 125 care facilities before choosing the Jewish Home Family to profile. “Most of the organizations we reviewed toss around the phrase ‘continuum of care,’ but they had made no commitment to keep folks in their homes. There are very few organizations that can step in at the moment of diagnosis and stay with the family through end-of-life care,” Mosher said.
Alzheimer’s, which is the most common form of dementia, affects many aspects of an individual’s personality, robbing people of their memories little by little. People afflicted begin to forget even the names and faces of their loved ones, who are often the very people caring for them as the illness progresses. Therefore, the families are in great need of support as the illness moves forward, and the Jewish Home Family is sensitive to this.
For example, in the documentary a husband described how his wife was part of the Jewish Home Family’s day health care program, but as the disease progressed he became unable to care for her at home. While he began to visit her every day in her new long-term care setting, each evening she said she was ready to “go home.” Instead of explaining that she is “at home,” which caused considerable distress, he now takes her out for a half hour drive, only to bring her right back to her long-term care facility at Rockleigh.
Strategizing about the least painful or disruptive way for families to respond to their loved ones in the midst of the disease is part of the kinds of palliative approaches discussed in the targeted support group that the Jewish Home Family hosts, which seeks to assist family members at every stage of the disease. Another husband described how it was helpful for him to hear experiences of those dealing with other stages of the illness, so he can look to the future, plan, and prepare for those stages that his wife has not yet reached.
“The show we produced demonstrates that it is possible to help a family foresee and plan the future. That is huge,” said Mosher.
“We’re not just responding to the need in very focused way, but we have our eyes wide open, and we understand that the experience that people have with Alzheimer’s disease means there’s a need for a continuum of care—be that with home visits, adult day care, assisted living, or even long-term nursing home care,” said Melanie Cohen, the executive director of Jewish Home Family.
“When we were contacted a year ago by Visionaries, they were interested in doing a profile of an organization that had a successful model for people serving those with Alzheimer’s disease,” said Cohen. “Visionaries is trying to bring attention to organizations that are making a difference, with approaches and ideas that can be replicated in other communities.”
The 26-minute film about the Jewish Home Family is set to air on stations nationally early next month. While our local public television affiliates may choose to air the documentary anytime, the film can also be viewed at the Jewish Home Family website at http://www.jewishhomefamily.org.
By Elizabeth Kratz
