We’re The Ones Who Can Change It, And That Gives Me Hope By Mary Fridley

By Mary Fridley

Dementia is not easy on anyone. Does it help that dementia continues to be framed by a dehumanizing “tragedy narrative” perpetuated in a self-serving fashion by a biomedical industry that has few if any answers? Definitely not. But the rest of us – including the “us” who may never be directly impacted by dementia – play an equally big role in making the experience of dementia harder than it needs to be. 

As people living with dementia consistently tell me, it is the environments they’re surrounded by – which can run the gamut from impatient to patronizing to abusive and life-threatening – that hurt them the most. Of course, none of us would thrive if we were told to “go home and die.” Or related to only as consumers and clients rather than as creators of our lives. Or dismissed as victims with no say in issues of life and death. 

But then again, none of us thrive in unhappy homes. Or in jobs that we hate. Or in classrooms where learning becomes synonymous with only the accumulation of knowledge. Or in conversations and relationships where no one is really listening. In other words, environments really do matter. So I want to take a moment to introduce the agebuzz community to just some of the people/shows/books I’ve met/watched/read recently whose work and words offer a gentle reminder of the very ordinary ways we all can – and should – create environments in and around dementia that embrace humanity and kindness.  

First on the list is retired journalist Stephen Gettinger, the author of a very moving June 8th New York Times guest essay entitled “My Mom Had Alzheimer’s. Now I Do Too. But I Learned From Her Not to Despair.” In it, he writes, “My mother spent the last three decades of her life afflicted by the loss of memory and control that comes with Alzheimer’s…When I was diagnosed with the same disease last fall…I visualized a pathetic decline that would make me and my family miserable…But that is far from the full story… As activities and some aspects of my previous life inevitably fade away, I hope to be similarly graced by a deepening of other capacities. Now, if anyone were to offer me the same deal as my mother’s — to live to 89 with receding memories, but to drift away in sleep still enjoying life and bringing joy to others – I’d grab it in a second.”

Also worth grabbing is The Housemates: Everything One Young Student Learnt about Love, Care and Dementia from Living in a Nursing Home, a best-selling account of the two-plus years author and dementia advocate Teun Toebes voluntarily lived as a resident in a Netherlands nursing home. In it, he writes “During my two and a half years at the nursing home, I began to see dementia as more of a social issue than a matter of care…Over the years, we have created a system in which the emphasis is on safety and control and not on happiness and a sense of community. But the upside is that since we’ve created this system, we’re also the ones who can change it, and that gives me hope.” To learn more about Teun – who has also co-produced an award-winning movie, Human Forever – click here.

And speaking of hope, I also recommend “Dad, You’ve Got Dementia,” a poetic sharing of conversations between author Kristen Phillips – who currently lives in New Zealand, where she works with Dementia Wellington – and her father Don in the final years of his life with dementia. I don’t have enough space to express how much I loved this slim but powerful book, so I’ll simply share one of my favorite Don quotes: 

There’s definitely

something 

I should be doing

Or not doing

Today

I couldn’t have said it better! 

I’ll end with a hats off to The Great Lillian Hall, a recent HBO movie described, I think fittingly, by at least one reviewer as a “love letter to theater.” Lillian Hall is a legendary actress – played by the equally legendary Jessica Lange – who is experiencing the early signs of dementia in the weeks leading up to her Broadway opening. Though I am a huge Jessica Lange fan and she is amazing in the role, what I was most moved by was her relationship with Edith Wilson, a long-time friend and assistant played by the always-amazing Kathy Bates. Though saddened by what her friend is going through, Edith never gets bogged down in the hopelessness of tragedy (nor ultimately do Lillian’s fellow actors) because she’s too busy creatively devising a (very ordinary) way for her friend to continue performing (on and off stage).

So yes, environments matter – and it’s up to us to create them. Or, to paraphrase the activist and songwriter Joe Hill (look him up if you’ve never heard the name): Don’t mourn, create!

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].