For the millions of people suffering from Alzheimer's disease - and the families and friends who accompany them on this difficult journey - the rampage of memory loss, deepening confusion, behavior and personality changes is devastating. For Patti Davis and her family, the devastation was painfully public. Her father, the late President Ronald Reagan, was diagnosed with the disease in 1994 at the age of 83.
During a visit to campus Tuesday, 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. Davis' presentation, based in part on her book "The Long Goodbye" (Plume, 2005), 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.
"Shortly after my father was diagnosed with Alzheimer's," Davis recalled, "he stood in the living room and said, 'I don't know where I am.'" His family - Davis, her mother Nancy and her siblings Ron, Maureen and Michael Reagan - felt similarly lost.
"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," Davis said. 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. Davis was living in New York when her father contacted her from his home in California to tell her about his diagnosis. Before flying home to see him, she recalled, "I thought about him constantly, so much so that I used to get lost in Manhattan - I'd find myself uptown when I needed to go downtown," she said.
"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."
But the disease brings with it much more than sentimental recollections of life before it, Davis said. 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.
"Alzheimer brings up everything, your entire history with your family," Davis said. "The things you went to therapy for 20 years ago that you're still kind of lugging around ... it all comes up big time."
In her 1992 autobiography, "The Way I See It," Davis recounts her turbulent relationship with both of her parents. And she has spoken publicly over the years of mending those relationships during her father's illness. This included a reconciliation with her mother, who made a point of attending her daughter's presentation at UCLA.
"This disease, like many life-challenging experiences, can also be a life-changing one if you allow it to be," Davis continued. "For all of the sorrow, hardship and everything that is overwhelming about this disease, it actually presents us with a really good opportunity to discover and uncover who we were always meant to be. It really is about taking a deep breath and willingly wading into that swamp, trusting that when you get to the other side, you will be free of all of that."
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," Davis 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, Davis said, 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."
Throughout her father's illness, Davis drew comfort from remembering "how he used to tell me about how he would talk to God about everything and trust that the answer would come. So that's what I did." It helped her realize that "his soul can't have Alzheimer's. I imagined layers of disease obscuring who he once was, with a shiny, untouched soul beyond." While her mother drew solace from this concept, her brother Ron and sister Maureen pooh-poohed it. "I'm not here to push any religion or belief on anyone," she told her UCLA audience, "but it seems to me that a disease this devastating should call upon us to loosen the boundaries of our thinking. "I held to that belief," she said, "through the 10 years of my father's illness," through times when his words made no sense, when he was upset about something he couldn't express and "when I realized that he no longer recognized me as his daughter." Ultimately, Davis said, we must realize that "we're bigger than our personal histories [and] greater than whatever wounds, scars, grievances, complaints or insecurities we've been carrying around with us. "Just as the soul can't be ill, the soul can't be hobbled by anything that has happened to us in this life."
Davis leads two weekly "Beyond Alzheimer's" support groups at the Ronald Reagan UCLA Medical Center and the UCLA Health - Santa Monica Medical Center in affiliation with the UCLA Alzheimer's and Dementia Care program. The new clinical research program is designed to meet the medical, behavioral and social needs of patients and their families.
Watch videos about UCLA's Alzheimer's and Dementia Care program at http://www.uctv.tv/alzheimers.