I came in to introduce the Presence Care Project, a new type of mindfulness-based approach to dementia care. I came out with tears in my eyes and a master lesson in wise acceptance.
Sitting in a circle, waiting, were 13 elders and a few helpers. Each one, very much interested in the topic at hand. Martin wanted to know "how to deal with forgetfulness." Mary had a "big problem with memory." Bob struggled with how to relate to his forgetful wife. Barry could only speak half mangled words. Gertrude had trouble remembering single words. Connie was thinking one word, and another one would come out instead. Each one struggling to remember and communicate.
Most of them very aware of the reality of their plight, and patiently bearing with the inadequate responses from a world not yet ready to understand.
Martin eloquently spoke of the double hardship of being forgetful and of not hearing well, made even worse by others' insinuations that he should try harder. I asked how he wished that they would respond, and received this gem from my wise friend: "What's needed is a total acceptance of the situation as it is."
Mary reflected on the harsh reality of aging. "The end of this life is not satisfactory. Better turn to something positive like holding a new baby. Now, that's life." I told her I may write a piece about our experience together, and she insisted I name it "Memories of the Forgetful."
Bob distilled what he had learned from the group into one short say: "Patience for myself, and for others." His wife chimed in and talked about needing to "Accept both the rotten and the wonderful parts of life."
The other Mary came to me after the group and cried. "My family does not understand. It is so hard what's happening to me. Please continue to go out and explain what it's like."
Barry managed to slip in a few almost complete sentences and corrected me when I referred to his forgetfulness. "No, it is dementia." There is no room for political correctness in the rawness of one's heart. He showed how thoughts are running circles inside his head. "I know what I want to say, but the words don't come out. I have aphasia. One day, I will no longer be able to speak."
Martin, Bob, Mary, Gertrude, Connie and Mary have something important to say to us all. They are asking us to please stop and reconsider the way we view and relate to them. Yes, they have trouble remembering, and speaking and understanding. Yes, they struggle with moving through the world. Yes, they need assistance with activities of daily living, things like taking a shower, getting dressed, going to the bathroom, finding the dining room, etc. Yes, they have trouble initiating tasks.
They are also incredibly wise, aware, resilient and strong. They know full well what is happening to them, both in terms of the direct consequences of the dementia process and the mostly unskillful responses their behaviors beget. From us, the ones still untouched by dementia, they implore greater empathy and understanding.
They are speaking for the millions of every day heroes who are courageously navigating the frustrating and frightening landscape of the dementia experience.
Are we willing to hear them?