In her book The Long Goodbye (Knopf, 2004), author Patti Davis, daughter of former U.S. President Ronald Reagan, reflects on her father’s struggle with Alzheimer’s disease, describing it as a “thief that steals a human being like nothing else can. The only victory over it is in the realm of the soul.” Davis delivered this poignant message of both the tragic and the triumphant moments in the lives of individuals with Alzheimer’s disease and their caregivers in her keynote talk at the 2013 Annual Meeting of the American Association for Geriatric Psychiatry in Los Angeles, California, in March. She spoke not only about her own experiences as a loved one and caregiver for someone with dementia, but also about the “Beyond Alzheimer’s” support groups that she founded in November 2011 at UCLA Hospital and has run ever since.
One of the greatest challenges facing Davis during her father’s illness after his diagnosis of Alzheimer’ disease in 1994 was loneliness. “We were a hugely public family,” she described, “yet we felt isolated.” Even in 1994 there was a great deal of secrecy and embarrassment about the disease, she lamented. At the same time, she felt a deep urge to “find” her father within the fog of the disease, to understand where his essence still resided. Alzheimer’s disease itself became a powerful if not unexpected teacher, imparting lessons about caregiving and a realization about the uniqueness of each sufferer’s course: “if you’ve seen one person with Alzheimer’s disease,” she learned, “you’ve seen one person with Alzheimer’s disease.” Davis spoke most passionately about how spirituality became her anchor, providing solace and the understanding that despite her father’s failing health, ”his soul cannot have Alzheimer’s disease.” Following her talk, I had the opportunity to sit with Patti Davis and learn about her experiences in more detail.
Agronin: How did you get started with the support groups?
Davis: I did lectures for a long time for the first few years of my father’s illness, and a lot of it was Q&A . . . and I felt like a lot of these sessions became almost like support groups. Many years after my father’s death people would still come up to me in Whole Foods or on the street and tell me very intimate things about what they are going through with a family member, and I know that there are close friends of theirs who they haven’t shared that with. So they know that I know what that journey is and they share it with me. It started to occur to me that that loneliness was still there, and I envisioned this room of people who were going through this in different stages of their journeys and in different circumstances in their lives, where there would be this comfortable place where people could talk about this stuff, and also laugh about it. Humor is really important and some of the things that we laugh about if you told somebody else who has no familiarity with it, they would think that you are a terrible person. Objectively thinking these things are not funny, but we are laughing about it and not making fun of that person, but we are laughing because you have to.
Agronin: What has it been like for you being in the group—given your own emotions? You are a leader but also in some ways a participant.
Davis: I decided when I started these groups . . . that I have to be willing to be intimate as well about what I’ve gone through. I am a participant. I am going through [dealing with] an aging parent as well—my mother is 91. The loss of a loved one to Alzheimer’s is an always evolving thing—there’s an alchemy to it and I didn’t realize it at the time. And then I realized that the lessons that I had learned in those ten years are really life lessons. You learn about acceptance, you learn about patience, you learn about living in the moment which is a really powerful thing to learn. The things that you learn if you allow yourself are things that serve you well in life.
Agronin: Clearly your spirituality has been an invaluable companion.
Davis: I have always been spiritual—the little girl who talked to God about everything because that is what my father did. So I never really lapsed in that. The experience definitely deepened my faith, and the moment before he died was certainly a miracle. [Note: Patti Davis described in her talk how her father opened his eyes as if to communicate nonverbally with assembled family moments before he died].
Agronin: How did your relationship with your father evolve over time during his illness?
Davis: I would cross that threshold into the house and I was in a different realm. I could find apertures into different memories. . . It was like soul-to-soul communication and it didn’t matter if we talked or not, and I trusted that whatever differences we’d had, whatever dissonance we had in the past was getting healed in this realm where nothing needed to be said.
To learn more about the support groups that Patti Davis and her colleagues run at UCLA Alzheimer’s and Dementia Care program, contact the Dementia Care Administrator at (310) 319-3222 or email@example.com.
Marc E. Agronin, MD, is the medical director of mental health services and clinical research, Miami Jewish Health Systems, and affiliate associate professor of psychiatry at the University of Miami Miller School of Medicine. He is a member of the AAGP Board of Directors. He can be reached at MAgronin@mjhha.org.