On Monday evening I spent more than an hour chatting via Skype with a student from Dartmouth College who was doing research for an oral history assignment about the Alzheimer’s caregiver and family member experience. We talked about my father –– the progression of the disease, how the time period of the late 1980s/early 1990s impacted both people’s awareness and the support available to families, and the physical and emotional toll of caring for a loved one who is battling a disease that attacks their very essence.
One would be forgiven for assuming it was a sad conversation, but in reality it was anything but. Because although we covered those realities, we talked mostly about the man my father had been before the disease, the brief periods when he came back to us even in the last weeks of his life, and the person we remember and celebrate.
People who know me well and people who have read Standing Tall: A Daughter’s Gift, understand something of the relationship I shared with my father. They know about a little girls’ night-time terrors, about summers spent beachcombing on Bellevue Beach, about days spent repairing and driving Land Rovers. They know about “Dick and Mrs. Barron” and the philosophy of respect. They know about one of my father’s most important questions: “What do you think?” They know about the simple act of being there and the power of unconditional love.
And in speaking with Devon Butler, I was given the gift of sharing part of his story all over again, of talking about the man who had, and continues to have, such a profoundly positive impact on my life.
At the end of the conversation, Devon asked me if there was anything else I wanted to share before we finished. There was one more thing, the story of a cold January evening when I traveled a slippery highway through snow and wind to speak at an Alzheimer Society event. Kenneth came with me so I wouldn’t have to drive alone. While I was speaking, he sat at the back and watched, then helped me pack up and load up the Land Rover. As we were driving home he told me there was another message he thought people should hear. Here’s what he said:
As I sat listening to the stories you told and looking at the photos of Dick up on the screen, it occurred to me that I only ever knew my grandfather when he had Alzheimer’s. I never knew Dick when he was well. I know only the “sick” Dick, not the “healthy” Dick. And despite that, my grandfather is one of the three most powerful and most positive influences on my life. People need to know that. People need to know how important they still are, to know that Alzheimer’s doesn’t take that away.
It was nineteen years ago today that my father’s struggle with Alzheimer’s finally ended at 4:30 in the morning, and roughly ten years before that when it began. But the disease did not lessen his positive impact on my life or on the life of his young grandson. It could not. And as Kenneth so wisely said, others on the Alzheimer’s journey need to know that.
You honoured us each and every day with your presence and your care.
And I will honour you, I will celebrate you, and I will love you forever.