Emotional? Yes. Tragedy? No. My mom, Tom Kitwood, and me, by Mary Fridley

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I've often wanted to post other people's writing on this website, but this is the first time it's happened. Mary is a treasured friend. She runs Reimagining Dementia, a global movement of 1200 people living with dementia, care partners, health and helping professionals, artists, advocates, academics and others committed to radically and creatively transforming the 'tragedy narrative' of dementia.

Here she writes with openness and clarity about her mother and their relationship, her life, her passion and her work. I hope you enjoy reading this as much as I have.

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It wasn’t supposed to be like this / Said simply / No lament of pity / Though many tears...

These are the first lines of a poem I wrote the day my mom, Almeta Fridley, realized she would not be leaving the Austin, Texas-based nursing home where she'd been living after a series of strokes had resulted in a fall from which she never cognitively recovered. While we were decorating her room with the pictures and artwork my mom most loved, she said, 'Oh, those are too nice for this place. You should take them home.'

It was then that I told her that 'this place' was now her home. My mom didn’t cry easily, but at this moment, she sobbed. At other times, I might have 'toughed it out,' not wanting to add to her grief, but on that day, it felt cruel to pretend the sorrow was hers alone. So we cried together.

Afterwards, while sitting on a bench together, she quietly said, 'It wasn’t supposed to be like this.' I was heartbroken, and every time I say or write these words, I tear up. Because she was right – her children had failed her. We knew she never wanted to end up in institutional care and yet we put her there, because none of us wanted/were in a position to do otherwise.

I say this more out of candor than guilt (though it’s there). As is often true for children caring for parents, my mom and I long had an uneasy relationship. In all honesty, I don’t think she knew what to make of me. Though I didn’t come out until my early 20s, it was pretty clear I was a lesbian or, at a minimum, not traditionally feminine (a 'tomboy,' as we used to say). Femininity was important to my mom, which was fine. The hurt and pain came with the blunt and often demeaning way she expressed dissatisfaction.

In the last years before she died, she and I did grow closer. We were both open to going beyond the constraints of 'family' and creating our relationship anew. As it turned out, we both liked the people we were becoming and the relationship we were developing. I was able to appreciate how smart, playful and artistic she was. Could she still push my buttons? Oh, yes! In this, Almeta Fridley had no equal.

As her cognitive decline became more pronounced, friends would ask me if she 'still knew me.' My honest response was, 'I don't know, nor do I particularly care.' I wasn't trying to be glib, but she and I hadn’t really known each other for most of our lives, so it felt hypocritical to relate to this new moment as dramatically different.

This said, this journey was far and away the most emotional of my life. As her primary, long-distance care partner from New York City, I experienced every feeling possible. There were days when frustration, grief, love, exhaustion, fear, anger and tenderness came crashing together, times when all I could do was cry.

And I’m grateful, because this journey also taught me something essential: no matter how emotional I was, no matter how soul-shattering the experience can be – and it can be – dementia is not a tragedy. Not in the sense that it involves only pain and no possibility. I understand why it can be hard to see possibility. It's not something we can experience alone. Possibility is something we create, with whoever is around us, including the people we're caring for. Will what they have to give be different? Yes. But so can how we receive it, when we learn to see it as an 'offer' to be even a little more playful with. And maybe, as an opportunity to see it as both caring for and caring with.

For example, when my mom lost her ability to speak in ways unrecognizable as English, she began moving her hands in beautifully balletic ways. I was especially touched when I saw this smoker of sixty plus years raise her hand to her mouth over and over again, so I joined her in creating a slow-motion 'smokers' ballets.' I was also deeply moved by the exquisite intimacy with which she 'spoke' to anyone around her, including those visible only to her.

And we did so with a wonderfully rag-tag community of support (a dementia ensemble - more on this later). Oh, and I made sure to share everything I was feeling with friends (actually, with anyone who would listen).

I’ve been asked if it would have been more difficult if she had responded with more agitation or hostility. Probably. Though I have every confidence that I would’ve organized the support necessary to continue responding with the same spirit of creativity, radical acceptance and collaboration.

Meeting Tom Kitwood

Among those joining our ensemble was the British social psychologist Tom Kitwood. For those of you unfamiliar with Dr. Kitwood, he played a pioneering role – much as Sigmund Freud did for the 'mentally ill' a century earlier – in helping people living with dementia move out of the shadows (in and outside of institutions) and into personhood.

I first met Tom Kitwood in 2016, the year my dear friend and pioneering physician, the late Dr. Susan Massad, and I co-created The Joy of Dementia (You Gotta Be Kidding), an interactive play and performance-inspired workshop/conversation series and our first introduction to the international dementia community.

I was hesitant to read his pioneering book, Dementia Reconsidered (1997), largely because I assumed he agreed with the contemporary practice of 'person-centered' care he is credited with inspiring. I believe this practice too often relates to patients /clients as isolated and autonomous individuals whose condition is 'inside them, which too often leaves those living with dementia (and every 'patient') related to as "problems in need of 'fixing' and those around them as 'the fixers.'

So imagine my delight in learning how wrong I was! In Dementia Reconsidered, Dr. Kitwood writes, 'Whatever happens to dementia can no longer remain a minor parochial matters, confined within the boundaries of geriatrics. There will, of necessity, be profound repercussions in society at large…Above all else, the reconsideration of dementia invites us to a fresh understanding of what it is to be a person. The prevailing emphasis on individuality and autonomy is radically called into question, and our true interdependence comes to light…Reason is taken off the pedestal that it has occupied so unjustifiably, and for so long; we reclaim our nature as sentient and social beings.' (Italics are mine.)

Creating a conceptual (and caring) revolution

Selfishly, I wish Tom Kitwood, who died at the age of 51 in 1998, was still alive. I would love to introduce him to the East Side Institute, where Dr. Massad and I created Joy of Dementia and where she was, and I continue to be, on faculty. The Institute is at the heart of an international development community that has been my social, emotional, spiritual, political and cultural home over the last 50 years.

I think he would be delighted to learn about the conceptual revolution Institute co-founders, the late Dr. Fred Newman and current director, Dr. Lois Holzman, have sparked over the last 45 years.

In that time, Dr. Newman and Dr. Holzman – together with me and many thousands of others; originally in NYC and now across the world – have created social therapeutics, a play and performance-influence, non-diagnostic, group-centered approach to social, emotional and cultural transformation. An approach that is is taking 'reason off the pedestal' in the interest of radically transforming what it means to be human from isolated individual to social/relational creator.

Social therapeutics is a new kind of psychology that incorporates the human ability to play and to perform – to simultaneously be who we are (our narrowly scripted identities) AND who we are becoming (what we create with others throughout our lives). Thousands across the world – and across sector and discipline – have been introduced to this 'non-knowing growing' community-building approach, hundreds through the Institute's flagship program, the International Class.

Over the last 45 years, the Institute community has created ensembles in which adults and young people are supported to play, perform and grow together. And in that time, I’ve seen tens of thousands of people – police officers, poor kids of color. physicians, oncology nurses, therapists, social workers, clients, affluent adults, corporate executives, oncology nurses, people of differing cognitive and physical abilities and so many others – bridge divides by playing together.

Social therapeutics is also among a vibrant and growing community of approaches that creatively challenge the problem-centered, individualistic, reductionist and biologically-based understanding of distress and illness perpetuated by traditional medicine and psychology.

'Yes, And': Playing and growing at any age and with any 'condition'

What we’ve discovered is that improvisational play, with its emphasis on 'Yes, And' – seeing, accepting and creating with 'offers' (including things don’t 'make sense' or that we find upsetting), gives us the most humanizing chance to relate to the uncertainty, unpredictability and fluidity of dementia (and life) in ways that promote intimacy, possibility and growth.

Another reason I love improvisation is because it immediately levels the playing field. It's about what we can create together, and allows us to move from 'problem' to opportunity, and reconnect with, strengthen and revalue the multitude of ways (creative, emotional, physical, poetic, silly) we can and already do relate in life.

Because of our focus on play, Joy of Dementia has been 'accused' of relating to people living with dementia 'like babies.' I politely but firmly disagree. In fact, I STRONGLY WISH the world, especially the care industry, related to them in the same spirit as we relate to babies.

After all, when babies babble, adults and older children don’t say 'You’re talking all wrong. Find a dictionary and don’t come back until you know how to talk.' We relate to them as speakers of the language well before they are. When a baby says, 'Goo goo, ga ga,' parents respond with, 'Yes, mommy will be home soon' or 'Yes, I like watching Bluey too'.

We support them to play, pretend and imitate the sounds and movements they see and hear around them. And they get to fail, in fact we applaud them for it. They are related to as speakers of the language long before they are and, as it turns out, this is how we all learn how to speak, walk and socially navigate the world.

Sadly, this unconditional embrace of pretend and play begins to narrow around the time children enter first grade. And by late adolescence and adulthood, it's pretty much vanished altogether, replaced by expectations that we know what to do, be able to solve problems and make sense of everything. And if we do play, we must 'play by the rules.' Little wonder then that when our cognitive credentials begin to fade, our perceived humanity does as well.

Which is decidedly NOT how we relate to babies and toddlers.

The environments we create matter!

Dementia is not easy on anyone. But, as friends and colleagues living with dementia have told me, it is the environments they’re surrounded by – which run the gamut from ignorant and patronizing to abusive and life threatening – that do as much, if not more, damage than the condition itself.

But why would anyone thrive if told to 'go home and die?' Or told they don’t 'really have dementia' because they’re so 'articulate.' Or related to as consumers/clients rather than as creators of both art and life? Or dismissed as victims with no meaningful say on issues of life, sex, death and more?

Then again, it’s also hard to thrive in unhappy homes. Or in jobs that we hate. Or in classrooms and other learning environments that are rote and boring. Or in conversations and relationships where assumptions prevail and no one really listens. In other words – and on this I am confident Tom Kitwood would agree – coming together to creates 'non-knowing growing environments' really does matter!

As Lynn Casteel Harper shares in her Sun Magazine interview, 'Speak, Memory', Dr. Kitwood, while visiting care homes in the 1980s and 1990s '...came to realize that the environments in which these people lived were profoundly stigmatizing and might actually have accelerated their decline. He noted the interactions they experienced throughout a day, and he labeled seventeen malignant things that happened to them, such as infantilization, being ignored, being banished. He said it wasn’t about the malice or ill will of individual caregivers. It was part of the air we breathe.'

So how do we come together to 'create new air to breathe' in all areas of life? You don't have to look further than the millions of people standing against the inhumanity being visited our our people and planet to realize that the vast amount of caring takes place outside of institutions. We don't have an answer, but perhaps our starting premise could be that no one, regardless of cognitive ability, lives in a 'separate world.' This might allow us to ask how, since we’re here together, do we creatively and collaboratively transform this mess together?

Being afraid together

What did creating a dementia ensemble look like for me and my mom? It meant inviting everyone who had a relationship with her to be part of the journey, and to give what they could. And believe me it was everyone, including her primary care partner (who my mom loved like a granddaughter), her actual granddaughters, my siblings, and a woman who hung out at my mom’s house as a child.

We also welcomed her primary care doctor, social workers and aides at the care home, friends in Austin and New York, relatives across the country and anyone else – even relative strangers – who wanted to join us. We made it up as we went along, supporting each other to laugh, cry, make mistakes, be frustrated, and have fun.

We were also afraid together – and when fear went from 'mine' to 'ours,' we have a much better shot at, as a colleague has so beautifully described, '…lift a once private burden and give everyone the room to breathe again.'

Another ensemble that helped me, and is helping so many others, breathe deeply and well is Reimagining Dementia: A Creative Coalition for Justice, a global movement of people living with dementia, care partners, health and helping professionals, artists, advocates, academics and others committed to radically and creatively transforming the 'tragedy narrative' of dementia.

Together with Dr. Massad and dozens of others, I helped found and currently lead the Coalition, which has almost 1,200 members in 50 countries. We've come together to promote a vision of humanity driven by imagination, collaboration, and a passion for creating something better. Thank you, one and all, for lifting my heart every day – you and our many allies are amazing!

In closing, I invite you to experience the power of play, performance, creativity which, as many are now discovering, is as 'curative' as any pill ever produced or course ever taken. And as revolutionary in its humanity as our world needs – and deserves.

Feel free to share this article with others, and please be in touch at Mary Fridley or by email: mfridley@eastsideinstitute.org. I look forward to hearing from you!

It Wasn't Supposed to Be Like This (the full poem):

It wasn’t supposed to be like this / Said simply / No lament of pity / Though many tears / An indictment of life? A grasp for honesty by a now blurry mind? / A tribute to dreams once dreamed or futures never imagined? / It wasn’t supposed to be like this / Perhaps a realization created as much by an ever-shifting present than a past regretted / Necessary to say aloud / Preparing for what’s ahead / To live as we can.

Mary Fridley

Faculty, East Side Institute, Founder, The Joy of Dementia (You Gotta Be Kidding!) and Coordinator, Reimagining Dementia: A Creative Coalition for Social Justice

Reimagining Dementia: A Creative Coalition for Justice East Side Institute Dementia Action Alliance (DAA) Alzheimer's Speaks Global Play Brigade All Home Care Matters Dr. Cecília CHAN Emma Smith Gwen Lowenheim Carrie Lobman Maureen Kelly Malene Søbygaard Ann Green Jennifer Bullock Nicolette McDermott-Ketchum, PA-C, BS Ed Nicole Smith Pia Kontos Dementia Support Australia Dementia Alliance International Global Phyllis Fehr Jackie Pinkowitz