It was late afternoon on a perfect October day, and I was walking across the neatly landscaped grounds of the retirement community where my parents live. My mom was next to me, stopping to look at plants and flowers and asking me their names. Plants that she could have easily identified before Alzheimer’s clouded her memory.
My mother spent many years gardening, turning my parents’ property in Annandale into a showplace—complete with stone paths, a small pond and fountain, a pergola and wonderfully intricate birdhouses that my dad made in his wood shop. She studied gardening books and catalogs and made lists—always lists of new plants to try.
For her not to know the name of a begonia or to say that she had never before seen liriope grass saddened me. But it reminded me, too, of my new role as teacher to the one who had taught me well. As I gave these plants names and patiently explained what I knew about them (I like to garden, too), I realized that this autumn moment—with the sun just right, the air clear and the mood warm, easy and lucid—was actually quite wonderful. If only it could be frozen in time, I thought, that would be perfect.
I was thinking about that October day last week as I read an article in The Washington Post, “A D.C. doctor blogs about his decline as Alzheimer’s claims his mind,” about Dr. David Hilfiker, the founder of Joseph’s House. In 1990, this extremely generous man opened his house to several homeless men in the District dying of AIDS. That was the beginning of Joseph’s House, which today serves homeless men and women dying of AIDS and cancer.
Hilfiker has Alzheimer’s, and he writes about it bravely, candidly and eloquently in his blog, Watching the Lights Go Out, where he is recording the progression of the disease in his own life.
How poignant, I thought, that a man who has given himself to caring for the sick and the dying now finds himself slowly and inexorably overtaken by a disease that will ultimately leave him as vulnerable and lost as those who live at Joseph’s House; yet, he unflinchingly and unselfishly writes of this disease in words that inspire and that Alzheimer’s patients and their families can take comfort.
I know a little bit about Joseph’s House. Each spring, a group from my church visits there and plants flowers. It’s a special experience, and the residents always appreciate our visiting.
In 2010, when Joseph’s House celebrated its 20th anniversary, some of us went to the ceremony held on the lawn. We read the names of residents who had died since 1990 and lit a candle for each one. It was very moving, and I felt privileged to meet and hear Hilfiker speak.
That day, he noted five guiding principles for Joseph’s House and end-of-life care, which I jotted down. They were simple and powerful truths; and when I pulled them out the other day after reading the Post article, I began to see them in a new light—that of an Alzheimer’s patient.
- Practice unconditional love and forgiveness. It may sound naïve, but it works.
- Concern yourself with being, not doing.
- Accept pain and suffering; don’t push it away.
- Respect the humanity of others.
- Life is not fair. Make a difference in the lives of those less fortunate.
In his blog, Hilfiker says, “We tend to be scared of Alzheimer’s or embarrassed by it. We see it as the end of life rather than a phase of life with all its attendant opportunities for growth, learning and relationships. We see only the suffering and miss the joy. We experience only the disappearing cognitive abilities and ignore the beautiful things that can appear.”
I believe Hilfiker is right, at least I try to see it that way with my mom. “Perhaps this Alzheimer’s is allowing me to enjoy my life for the first time,” he says, “not because things are any better, but because I’m more emotionally in touch with the goodness. I feel rooted, grounded. I’m where I’m supposed to be.”
The lights will go out eventually; but until then, a candle burns and sputters, illuminating the shadows. Best to treasure those moments of clarity when they appear than to curse the darkness.