A Legacy of Survival: Part 2 of 3
November 9, 2017
“For the family it becomes a matter of survival.” — Sue Harris
The Family Survival Task Force
It’s easy enough to say “to live and to learn” but another thing altogether to endure and survive the challenges of caring for a loved one suffering cognitive decline. The silver lining for Anne and Sue — two committed, outspoken advocates — is that it was a masterclass of how to make the most of the limited resources available to them. They soaked up what they had learned and wanted to share their stories with others.
The MHA saw that family members like Anne and Sue were the experts in their own loved ones’ complex situations. They decided to set up the Family Survival Task Force, named from Sue’s statement that when a loved one is stricken with brain damage, “for the family it becomes a matter of survival.”
On March 29, 1977, two weeks after Sue Harris’ husband died in a nursing home, the Task Force held its first public meeting in a church basement on Van Ness Avenue. Expecting a small crowd, more than 250 people showed up. It was the first community meeting in the U.S. devoted to the problems of adult-onset brain damage or disease and, even more revolutionary, to the needs of their family caregivers.
Focusing on addressing behavior changes, not diagnoses
The experiences of Anne and Sue, and the other caregivers who grasped for help from this first small support group, led FCA to its landmark approach. First, that the problems to be addressed were the functional aspects of brain damage no matter the diagnosis — the behavior and cognitive changes that made these patients so difficult to help. And second, that the caregivers themselves were also devastated by their loved ones’ illnesses and themselves in need of assistance.
What becomes of people with dementia?
But achieving even the first step — acknowledgment that a problem existed — was not easy in those early years. You could see the disbelief and often boredom in the eyes of policymakers, elected officials, journalists, and well-meaning but frustrated professionals in the fields of aging, health, social services, and rehabilitation.
“Policy people just didn’t want to believe this group of unserved people existed,” Sue said. “I remember the horrified looks on people’s faces when the truth dawned on them, that no one knew what became of people who had dementia or strokes or head injuries. Well, I’ll tell you what became of them: they came home and stayed with their families.”
Words like dignity, independence, and choice for family members and individuals suffering from these conditions were an afterthought.
— Diana Petty, FCA Executive Director 1978–1989