Embracing The Shame Of Dementia (And Life) By Mary Fridley

By Mary Fridley

As I have written in past posts, I practice social therapeutics, an approach that makes the connection between play in early childhood and theatrical performance in adulthood. Both play and performance are developmental, that is, they create something new out of what exists, and what we’ve found is that relating to people in this way activates their capacity to play, perform, philosophize and, in that process, create new ways to be, see and relate to ourselves, to others, and to the environment. 

Developing these kinds of creative therapeutic (with a small T) environments is not easy. As I write this, I am thinking about a recent conversation I had with a wonderfully kind and compassionate dementia professional, in which she shared a story about a couple who, though passionate about dancing, stopped as the husband’s dementia worsened. Aware there were no physical reasons for this, my colleague asked the wife why they no longer dance, to which she said, “We can’t dance the way we used to so we’re afraid people will make fun of us.”

Every time I share this story, I want to cry (and sometimes do). At the same time, I find it an important reminder that one of the biggest barriers to emotional growth is our collective reluctance to acknowledge, much less embrace, shame and humiliation. And aging and dementia – along with any life situation in which we fail to live up to some idealized notions of “how things should be” – is humiliating for everyone, including, I would argue, for the “worried well” who may or may not ever be diagnosed.

When I shared this story with another of my colleagues, she responded with, “I’m not sure I have ever heard that word spoken aloud re dementia. But of course, humiliation. Humiliation is why my best friend’s mother insisted on holing up in her immaculate home at the first signs of dementia and it is why another friend stopped going to visit her mother in her care facility.”

The human ability to play (with improvisation as a form of play) and perform is how I believe we have the best shot at engaging shame, humiliation, and other barriers to lifetime growth and with considerably more joy. For those of you who are thinking, “I don’t have an improvisational bone in my body,” I respectfully disagree. We are all improvisers and performers, though it is not a life skill that is supported or terribly valued (perhaps because women are generally more adept at being improvisational in life than are men). But there is no way that we have lived through the massive disruption to daily life that has been COVID-19 – not to mention dementia and other life-changing experiences – without tons of improvising. 

By way of an example, I share a story from a friend and colleague whose husband – I’m calling him Jim – lived with dementia before his death in 2021. 

Jim is up and about, not able to sleep. I’m trying to sleep but finally, I get up and I’m absolutely furious and exhausted, so I start shouting, “What the hell are we going to do? This is impossible. What are we going to do?” He says to me, “Let’s call my mother.” And I’m thinking, “Oh, my God, this mother had died many years before” but I restrained myself from making any corrections and eventually said, “What a good idea. We both need a mum right now to sort us out, don’t we?” I believe Jim realized we needed something to calm us down, which was his mum, so I told him, “We’ll find her in the morning. Let’s snuggle up on the couch and listen to Oscar Peterson.”  And that’s what we did, which helped me see that the possibility of a complete other way of doing something was important because, in my shame, I was tempted to be the one who felt I had to kind of come up with the solution.”

We all have a tendency to substitute “coming up with solutions” for sharing our shame and humiliation with others, so I am thrilled that she was able to experience the very ordinary magic that happens when human beings of all abilities and life experiences are supported to work with others to create the solutions that we need to move and support ourselves, our families and our communities as we go forward. If you are interested in learning how to do this in your life, please be in touch. You can reach me at [email protected].

Mary Fridley is on the faculty at the East Side Institute in NYC, co-creator and leader of The Joy of Dementia (You Gotta Be Kidding!), and coordinator of Reimagining Dementia: A Creative Coalition for Justice. An accomplished teacher and workshop leader, Mary practiced social therapy for 12 years and uses the social therapeutic approach as a teacher and workshop leader. She is the author or co-author of several articles and chapters on the Joy of Dementia, including a chapter that appears in The Applied Improvisation Mindset published in August 2021. Additionally, Mary is a guest blogger for agebuzz and a playwright and theater director. She makes her living as a non-profit fundraising consultant. She can be contacted at [email protected].