November is Alzheimer’s Awareness Month. Approximately 14 million Americans suffer from Alzheimer’s disease. Two chronicles have been published that portray the impact of Alzheimer’s disease on family members. Both were written by daughters of Alzheimer’s victims. One described the struggles of a familiar name, Ronald Reagan, who was diagnosed with the disease in 1994 at the age of 83. It was written by his daughter, Patti Davis. The other was written by the daughter of a less well-known individual who resided in Vancouver, Canada. Symptoms began when Midge was only 52 years old.
During a visit to the UCLA campus on October 22, Patti Davis talked about her father’s “brave decision to tell the world about his diagnosis,” the decade-long decline leading to his death in 2004 and the life-altering impact the experience had on her life. Patti’s’ presentation, based in part on her book “The Long Goodbye”, was the first in this academic year’s Open Mind lecture series sponsored by the Friends of the Semel Institute of Neuroscience and Human Behavior.
Patti recalled, “Shortly after my father was diagnosed with Alzheimer’s, he stood in the living room and said, ‘I don’t know where I am.’” His family, Patti, her mother Nancy and her siblings Ron, Maureen and Michael Reagan, felt similarly lost.
Patti said, “We were a hugely public family, but we felt isolated. The disease encases you in a deep loneliness that you can’t seem to find your way out of.” She added that this was particularly true, she said, in an era when “people had heard about Alzheimer’s disease, but nobody wanted to talk” about a condition that was considered mysterious, terrifying and embarrassing: something to be suffered in silence. “I thought about the history we shared,” a history he would come to forget. “I thought about the little girl who worshipped her father, who thought he could do anything. I thought about the young woman who hurt him in the ways that daughters do when we want more of our father’s attention and roil the waters in order to get it.” However, the disease brings with it much more than sentimental recollections of life before it. Maintaining patience when someone with Alzheimer’s asks the same question 40 times, getting the car keys away from a parent who is no longer capable of driving, having a spouse who calls you by the wrong name – difficulties like these, compounded by family dynamics, are a formula for emotional turmoil.
As her father’s illness progressed, a bittersweet peace descended upon him and their family as he moved from the early stages of agitation and upset to a more serene surrender to the inevitable. In this transitional stage, which is unique to Alzheimer’s, “their eyes have a sort of wariness,” Patti said. “It’s as if they’re standing at the edge of a fog bank, knowing that it’s going to engulf them and knowing that they can’t outrun it.
In her father’s eyes, she said, she saw a pleading, but also an attempt to hold firm. “I felt like he was on a high wire and using every bit of his strength to hold on to it,” she recalled. When he drifted past that stage and the fear mercifully left him, his family felt relief. “In this strange world, it makes perfect sense to feel relief when someone you love has drifted far past the terror of knowing what it is they’re losing.”
Vancouver, Canada author Sarah Leavitt confronted the impact of Alzheimer’s disease on her mother. Sarah chronicles her mother’s transition from an outspoken, passionate, and quick-witted woman to a forgetful, fearful childlike shell of her former self in her graphic novel “Tangles.”
A graphic novel is a narrative work in which the story is conveyed to the reader via sequential art, either in an experimental design or in a traditional comics format. Leavitt’s novel is in the traditional comic format; however, it is by no means comical. Her mother, Midge, was diagnosed with Alzheimer’s disease in 1998; for the next six years, Sarah’s father and other family members. She eventually required the services of a professional caregiver. As her mother’s illness progressed, Sarah made numerous notes and sketches. After her mother passed away, Sarah wrote the novel to remember Midge as she was before she was stricken; she also wrote it to chronicle the progress of her mother’s illness and its impact on family members. To date, “Tangles,” represents the only published Alzheimer’s-related graphic novel. Library Journal describes it as “A glowing, heart-wrenching memorial.” The novel should connect with anyone who has been involved with a loved one facing this tragic decline in function.
Sarah shares her family’s journey through a harrowing range of emotions—shock, denial, hope, anger, frustration—with poignant detail, all the while learning to cope, and managing to find moments of happiness. Her mother, a Harvard-educated intellectual, struggles to comprehend the simplest words; Sarah’s father Rob slowly adapts to his new role as full-time caretaker; Sarah and her sister Hannah argue, laugh, and grieve together as they join forces to help Midge get to sleep, rage about friends who have abandoned her, or collapse in tears at the end of a heartbreaking day.
The Long Goodbye