Dementia is a Trickster! It changes what we know to be true about life. It upsets the plan. It causes us to shift the trajectory of our life and as a result, we learn, we grow, and we are challenged.
Dementia is a trickster that hides from us in times of introduction or brief meetings, it is the playful spirit that comes out, maybe for the first time, causing us to questions how well we truly know someone. It lures us into answering the call to transforming our work to become relational with our loved one all over again. It has us look over here while something else is going on over there. It hides the true meaning of an action, behavior, or word. It tricks both the knowledgeable and the under-trained. It tricks families, friends, the community. It tricks the person with dementia. It evolves and is quick, keeping us on our toes and our head spinning. It brings sadness, but it can also bring joy. It forces us to throw out the textbook and sometimes even the research so that we may best be present for a person with dementia in a new and different way.
As a dementia and creative engagement specialists, we work with the trickster to outsmart it, outplay it, outwit it. Sometimes we are successful, sometimes not. But we are not called to be smarter than it, but flexible, playful, and smart about how we approach it. The Trickster, with all that it does, can never take away the person, the personality, the life, the story that is in each one of us. It cannot take away our relationship, only invite us into a new way of being in relationship. It cannot take away interests, desires, gifts, and experiences, only shift how we see and learn about them. When we take time to get to know the person, as well as the dementia, we can play and grow together. We can continue the story, joining in or staying with this new chapter in the person’s life. A Trickster it may be, but a person they will always be.
Several years ago in a drama therapy class, I came to the conclusion that Dementia is the Trickster something more than a Master of Social Deception. In mythology, the trickster forces a change in the status quo. It is intelligent or has secret information that is used to play tricks on another person, or it breaks what we consider normal or appropriate behavior. It can be a terrible character and in the case of dementia can also be the one that brings out the best in a situation. The Trickster causes us to come face to face with the mortality of life, but also the playfulness of the human soul. In my personal notes, dementia was often written as Trickster, but it was not until I heard that Kyrié Carpenter also call dementia the Trickster that I wanted to share with thought with you. I was pleased to see that I was not the only one making the connection and am now interested if there are more of us out here. What framework do you use to think of dementia? Do you feel the need to think of it as a character? Does it help to think of the world as a cast of characters made up of a set of diagnoses? Or is it simply a diagnosis? Do you see it as harmful? Or, hurtful? Let me know.