Over the last two years, my East Side Institute colleague Dr. Susan Massad and I have had the honor of leading “The Joy of Dementia” workshops around the country, including one in the San Francisco/Bay Area that took place earlier this year. We were joined by about 60 people, a number of whom are living with dementia. One of them, a former college professor whose diagnosis was still recent, began sharing the experiences and emotions she was going through, and ended by saying, “What can I say, it’s just weird.”
I was incredibly moved by her telling us this – both because it’s not an easy thing to say – and because she’s right. Dementia is weird – in the most ordinary sense of that word. Things start to become slightly, and then not so slightly, and then greatly off-kilter – not only for the person living with dementia but for everyone in their lives. This can leave us upset, afraid and uncertain. And when faced with uncertainty, it is tempting to try and control, rather than embrace, the situation. Believe me, I am not saying this critically. When I was with my mom – who has since passed away – while she was living with late-stage dementia, I could feel the need to control in every bone in my body. But fortunately for her, and everyone else around us, I could also appreciate and even enjoy the weirdness of the situation.
For example, I was genuinely shaken when I realized that, despite hearing over and over again throughout my life that a person with dementia is “no longer there,” my mom really was there, and I had to figure out how to be with the her she was becoming. Well-meaning friends would often ask, “Does she know you?” and my honest response was, “I have no idea and I really don’t care. What matters to me is that I know her and I want to be as giving as possible.”
But in order to be closer to dementia, we have to do weird things – we have to babble, we have to play and pretend, we have to embrace the fantastical, all of which most adults are really ill-equipped to do. And I understand – it’s hard being weird. Which is why I believe something new is needed in the dementia arena and, I would argue, in the incredibly uncertain world in which we are living, and I think I have something to offer. I understand why people can be afraid of or put off by being weird, but I have a “solution” – rather than being weird, try performing weird.
Without going into a lot of detail, performance is the word that is given to the socially sanctioned activity of being who you are and who you are not after early childhood (where babies and young children grow precisely because they are supported to play, pretend and imitate the older kids and adults around them. Whether we like it or not, dementia demands a new performance from all of us because “what we know how to do” doesn’t work, and more often than not leaves us lonely and isolated from even those closest to us. What I love about performing is that we never perform alone, we perform with others, we create—to use the theatrical term—an ensemble. And it is in this ensemble that we are supported to try new things in our lives and, I would argue, to grow with, rather than be paralyzed by, the emotional journey (roller coaster) that is the dementia experience.
Which is why I feel passionate about helping everyone who experiences the weirdness of dementia (or anything else in their lives) as shameful to learn how to embrace our “otherness,” our difference, our limitations in ways that allow us to move closer to, and create more intimacy with, the people in our lives. Because none of us – no matter our life circumstance – have to be locked into the roles and expectations with which we are all saddled. We can endlessly create and develop community, and ourselves, simultaneously.
I recently read a wonderful article, “Out of Time: Un-knowing the self”, written by Sallie Tisdale for Harpers Magazine, a brief section of which I’d like to share with you:
‘Time changes when the brain fails, becoming strange and plastic…Dementia gives us an opportunity to question how time and language and perception work. It strikes me that both artistic and religious practice have these qualities: new ways to use words, repetition, pauses and silences, gestures and images – expressions of the expansive interior longing to be heard…An opportunity to question how time and language and perception work.”
What a remarkable gift, and one I was given while with my mom in her last months. I was mesmerized by the graceful movement her hands would make – seemingly with a life of their own – and touched by this woman, who rarely spoke unless spoken to, babbling with exquisite animation to whoever
When I thanked Carolyn Halpin-Healy for sending me this article, she responded by saying “There really is so much poetry in dementia, if we could only think less in terms of loss.” And, I would add, tragedy. Does this mean we won’t feel a myriad of emotions as we go through this journey? No. But if we can embrace the weirdness, the poetry, the creativity, the journey can be far richer and infinitely more human.