Ronald Reagan’s Daughter Patti on Getting Beyond Alzheimer’s

By Patti Davis | Caregiving

The night before my father died I listened to his heart through the nurse’s stethoscope. It was thready, weak. We knew death was closing in. I looked at his arms – so thin – and the outline of ribs on his chest. “These were the arms that lifted me onto horses when I was a kid,” I told his nurse. “And swam hard in the ocean to catch the biggest waves. I used to tell him he was stronger than anyone else’s father.”

We were at the end of a ten year journey. When it started in 1994 – when my father, Ronald Reagan, wrote a letter to America telling his beloved country that he had been diagnosed with Alzheimer’s – I told myself that his soul couldn’t be ill. And if I kept reaching beyond the disease, beyond the broken off words and dimming memories, I might be able to find my father in the mysterious shadows where the soul resides. It became a sort of mantra for me in that long decade. I will always think of those years as a time of great learning and great loneliness.

People didn’t talk much about Alzheimer’s in the Nineties, yet everyone knew that my father had been diagnosed with the disease. Occasionally someone would stop me and tell me that a relative or friend had Alzheimer’s, and it was really difficult and painful to watch. But that was the extent of the information. I often felt like I was on a trek through the Himalayas with no Sherpa to guide me. So my guide became my inner voice and the spiritual faith that had been instilled in me as a child. Keep believing that his soul is in there, unaffected by disease, I told myself, and let that belief anchor you.

The next day when my father died, he opened his eyes for the first time in days. They were blue again, which they hadn’t been in about a year. Over time they had faded to a grayish color. He looked at my mother with the alertness and presence of someone who was not ravaged by Alzheimer’s. His eyes twinkled…and then he was gone. His soul showed up to say goodbye, to prove that Alzheimer’s can steal much from a person, but it can’t touch the soul.

I run a support group now for family members and caregivers of people with Alzheimer’s and dementia. It’s called Beyond Alzheimer’s. The name is a perfect summation of what I learned on the journey of losing my father to the disease. The people who come to this group have frequently had no opportunity to talk openly and freely about what they’re going through, what they feel and fear and wrestle with in the late hours of night when sleep won’t come. They come to this group because it’s a sanctuary, and because when they’re there, they feel less alone.

I learned a lot from the loneliness of my journey, but I wouldn’t wish that loneliness on anyone. You need travel buddies. You need to be with other people who know what you’re going through, who won’t judge you or dismiss you. Several group members have told me that, before coming to this support group, no one had ever asked them how they were doing.

In the world of Alzheimer’s, more than with any other disease, the family members are patients too. Their world narrows and becomes riddled with fear. Having a safe place to go and talk, cry, laugh sometimes too, widens the world and lightens some of the pain.

I’ve told people whose loved ones have just died that they won’t remember them as they were in the last stages of their life, eroded by dementia and drifting in some faraway realm. They will remember them whole and present. It’s how my father lives in my memory – the man who hoisted me onto the back of a horse when I was small and would follow him anywhere. The man who told me to get back on the horse after I fell off, otherwise fear would take hold and that was never a good thing. The man who taught me how to ride waves in the ocean, whose voice calling out, “Swim!” was the voice I trusted to not let me drown. There were times in the decade of Alzheimer’s when I felt like I was drowning in grief, but just as he did in those blue summer days, somehow he taught me to swim.