Washington DCI spoke to the staff at Joseph’s House this morning about my Alzheimer disease. Joseph’s House is the home and hospice for homeless men and women with AIDS and other terminal diseases that I founded in 1990. I’m still somewhat involved, teaching interns about injustice toward the poor and helping with some fundraising. For this morning I was invited into a conversation with the staff and volunteers about Alzheimer’s, especially the spiritual changes since my diagnosis.
When I walked into the house, I didn’t recognize one of the people there. I asked her if we’d met before. She didn’t think so. I offered my hand and said my name, but she didn’t take my hand or give me her name. Thinking she hadn’t heard me, I asked her name a second time but she seemed uncertain what to do. She stared at me blankly. Someone else broke my confusion and introduced her to me as Joy and I guessed that she was a new patient with, perhaps, AIDS dementia.
It was a wonderful morning! Given my position as founder, my years on the staff, and my regular teaching there, I knew almost everyone there, so it was mostly an opportunity to sit with them in the reality of this disease and share with them my journey of the last six months. Many of them had received my email several weeks ago so they were familiar with my story. I recounted my history briefly with the disease and talked about the many freedoms it’s given me: letting go, living in the present, the love and support of my community, freedom from shame and humiliation, and others.
During the meeting, Joy was sitting next to another woman I didn’t know, Grace, who’d apparently been volunteering at the house. As I was talking about how the diagnosis had deepened the relationship between my wife Marja and me, the kind of future I foresaw for us, and the pain it would cause Marja, Joy’s eyes filled with tears. Grace told us that they were partners and that Joy had had Alzheimer’s for seven years. A while later, Grace was sharing that Joy had started some time ago dancing and singing, things she never used to do before. Joy gave a little embarrassed laugh, looked down demurely, and said something like, “Oh, don’t start on that.” But she seemed delighted that we knew about that part of her, too. I felt a little piece of the “real” Joy peeked through the clouds of her dementia.
Grace commented upon how much Marja and I would have to learn as we go through the stages that they she and Joy have already traversed. Their comfort with one another—even as Grace talked about Joy’s disease—showed me that they had talked candidly about Joy’s dementia and its impact on their relationship
Grace knew about the pain and the celebration. Her life, too, had been enriched during these seven years of sharing Joy’s journey. They had discovered, as Grace said, a “silver linings” of this disease, which is no less true for being a platitude. It was a special moment in the morning.
I recognized with some embarrassment, though, that as I’d come in and tried unsuccessfully to introduce myself to Joy, I had responded in much the same way so many people do to dementia: confusion and withdrawal. I don’t blame myself: I was confused. But I also recognized that from Joy’s point of view, such reactions, repeated over and over, must be painful.
Throughout our time together this morning, the people—most of whom I’d known so well—responded warmly to my sharing … and to Joy and Grace’s sharing. It was part of that terrible and wonderful tapestry of these past months. I felt so enveloped by love and support. It was such richness. I would have missed it all if I’d not “gone public.”
Other people in the group had experiences with dementia, too, of course. Dementia can be part of AIDS and other diseases. Almost 50% of people eighty-five years and older have Alzheimer disease. At the end of our time together, Sherry, one of the young staff members whom I knew well, asked me whether her mother should be evaluated. Her mother has wondering herself about evaluation, but Sherry had been ascribing any problems to stress or other causes, and her mother had not yet been evaluated. I told her that I thought it was important for her mother to be evaluated, and I could see Sherry struggle silently with the implications of the morning. On a very different level, our time together had been important to her, too.