When, in 1994, five years after leaving office, Ronald Reagan revealed that he had Alzheimer’s disease, the national dialogue on the illness was just beginning to take shape. The President's news, which he shared through a poignant, handwritten letter, struck a chord with families who faced their own struggles with Alzheimer’s.
At the time, Reagan’s youngest daughter, Patti Davis, was living in New York City, where, she says, strangers began stopping her in the street to express their condolences and concern for her father, and to share that that they, too, had dealt with Alzheimer’s in their families. But the conversations went no further. People had no guidance to offer her.
“It was very clear to me that I was on my own figuring out how to go on this journey,” says Davis, 59. “It was also clear to me that everyone in a family loses someone in their own way. My brother was losing him in a different way than I was. Obviously my mother was losing him in a different way than we were. My sister got melanoma, so she was waging her own battle.” (Maureen Reagan died in 2001.)
Without any professional direction, Davis learned to improvise and soon found solace in being able, as she describes it, to separate her father’s physical being from his spiritual one. "I thought, ‘He is ill, but I don’t believe his soul can be ill,'" Davis says. "I don’t believe his soul could have Alzheimer’s. If I can look past what I’m seeing, the physical deterioration, then it will inform how I deal with him. It’s an act of faith to believe that, because what you’re seeing physically is so different."
Forging a New Relationship
Searching for her father’s soul as his health declined wasn’t easy. Davis had never been close to him, and says she had spent her life trying to get him to notice her. "Dad was a very elusive man," she says. "Both my sister and I were daughters clamoring for more of his attention. Her way was to be the perfect daughter and the perfect Republican. Mine was to be the bad girl, because when I was the bad girl, I got his attention. Truth was, neither one of us got the attention we wanted."
During Reagan’s 10-year battle with Alzheimer’s, Davis got to know him in a different way, as sweet and gentle facets of his personality were exaggerated by his illness. When she started giving lectures about her experience, she found that many others felt as she did, that somewhere behind the lost memories and physical struggles, the real person was still alive and well.
Seeing a healthy soul inside her father made the experience of losing him more tolerable, as she wrote in her book The Long Good-bye, published in 2004, the year he died. “It’s not about it getting easier,” Davis says. “I was still grieving. But it gets a little bit smoother because there is another stream of consciousness that keeps you looking beyond the disease.”
Sharing the Experience
After years of being approached by others to talk about their shared experience of losing family members to Alzheimer's, Davis last year reached out to UCLA Medical Center with the offer of launching a support group for caregivers, friends and loved ones of people with dementia. The first Beyond Alzheimer's group began meeting weekly at the Ronald Reagan UCLA Medical Center in Westwood in November 2011, and a second group started sessions in Santa Monica last March.
(MORE: Facing the Loss of Someone Dear)
The group's mission is to give caregivers and family members a place to talk, get advice and gain strength, Davis says. Participants discuss the ways they deal with the many practical considerations of Alzheimer's, such as taking away a loved one's car keys, as well as the emotional challenges of gradually losing someone to the disease.
One of the biggest hurdles, many caregivers tell Davis, is the decision to place a loved one in a nursing home when they can no longer care for that person. Many resist making that move, even when it’s clear that they need to do so. “I have seen amazing transformations of people making that decision and feeling okay about it, once they realize they’re not really abandoning that person,” Davis says. "You see the weight lifted.”
Davis is a co-facilitator for both groups, with help in Westwood from UCLA geriatric psychiatrist Linda Ercoli, and in Santa Monica from UCLA neuroscientist Xavier Cagigas. “They have the technical and medical knowledge I don’t have,” she says. “It makes for a good balance.”
Davis is hopeful that the group's approach can be replicated in other medical centers around the country. “It’s just really important to find other people who are going through the same thing,” she says. “That’s where the most healing comes in. Like I said, people mean well, but if they have no common experience with this, they don’t know what to say to you.”