They Were Being Managed, Not Met. So, She Told a Better Story.
They Were Being Managed, Not Met. So She Told a Better Story.
Marysue Moses grew up in a Scrabble family, loved words, and spent her youth as a devoted theater kid — playing Gertrude and Hamlet, learning to inhabit other people's stories. She had no idea she was building a kind of creative empathy she'd need in a completely different context. Then her mom was diagnosed with dementia. What Marysue found in those caregiving rooms troubled her: the tragedy narrative, the lack of meaningful engagement, the sense that people were being managed rather than met. So she did what theater kids do — she told a better story.
In this episode of Who We Become — Life Beyond Change, Amanda Lentz sits down with Marysue Moses — author, dementia care specialist, and former theater artist — on a special day: the launch of her book, Looking Past Dementia. It's a conversation about how a daughter's love became a life's calling, how a skill learned on stage ended up mattering more than anything else, and what two decades of looking past the diagnosis has taught her about identity, connection, and who we remain when memory begins to change.
The Girl Who Loved Words
The words came first. Marysue grew up in a Scrabble family — a grandmother over every Sunday, a board out at Christmas — and wrote her first book at age five, on yellow paper, called The Littlest Star. As the youngest of five, its theme was learning she was okay just as she was. An enormous childhood crush on Julie Andrews (there was a scrapbook, and clippings sent away for from Life magazine) pulled her toward the stage.
In high school, a forward-thinking drama teacher everyone called "B" staged Hamlet and other work far beyond the usual scope — and a company of friends grew up together through it, several of whom, including her late husband and her closest friend, stayed in her life for decades. A BA in theater led to waitressing, then a year at drama school in London, and later a Shakespeare course at the Royal Academy of Dramatic Art. She was, as she puts it, thoroughly steeped in it — building exactly the kind of "creative empathy" she'd one day need.
When Her Mom Was Diagnosed
The first signs didn't announce themselves. Visiting her mother in Arizona with her young daughter, Marysue was left waiting on a bench in the heat for an hour when her mom simply forgot to pick them up. When they finally arrived by cab, her mother was unbothered — "I thought you were coming tomorrow" — and seemed newly stressed, banging around the kitchen. Her father had already died, and Marysue believes the loneliness played a real part in her mother's decline.
No one was saying the word dementia yet. The family agreed only that she needed to be closer to them, and she moved to a senior high-rise in Denver. Then came the moment that opens Marysue's book: one night her mother got up, took her purse downstairs, and asked the security guard to call a taxi — she needed to get home to Junction City, Kansas. That was the turning point. Assisted living followed, and eventually memory care. Marysue, raising children of her own, was squarely in the sandwich generation, and knew almost nothing about what was happening.
The Rooms That Troubled Her
What she saw in those communities is what set everything in motion. She later learned that on one visit, her brother found the residents lined up in front of a television watching a graphic documentary about vicious dog attacks — and pulled their mother out of the room. On her own visits, Marysue found something quieter but just as troubling: nothing for her mom to do. No calendar. No activities staff until midweek. She filled the hours herself, ten to five, playing a gentle, improvised version of Scrabble.
Then she met one of her mother's friends — Jocelyn, a former actress. When Marysue mentioned she loved Shakespeare, Jocelyn delivered the entire "All the world's a stage" speech, letter-perfect. Something clicked. Here was a person the tragedy narrative had written off, and the words were all still there.
Tales From a Trunk
On the plane home, Marysue had her idea: a trunk on wheels, filled with props, costume pieces, and objects you could touch and smell, each tied to a story. She built four programs — a folk tale, a spring poetry set, a holiday show, and "Shakespeareance," in which she played both Romeo and Juliet — and carried the trunk on the plane to perform for her mother's community. It was a hit. She kept doing it, around the Twin Cities and in Denver, and realized she loved being with these audiences.
Tales From a Trunk launched her into dementia care for good. She went on to work as an activities coordinator and then memory care coordinator, earned a master's in gerontology, and became a dementia program coordinator overseeing training across nearly forty sites — teaching care teams, above all, how to approach and befriend the people in their care.
The Tragedy Narrative
Marysue has a name for the thing she's spent twenty years working against: the tragedy narrative. It's the message, once amplified by bleak fundraising campaigns and still delivered by some doctors, that a diagnosis is the end — go home, get your affairs in order, there's no cure. She's heard people with dementia describe being told exactly that, and describe doctors who spoke only to their spouse and never looked at them.
She's careful and generous about it — she believes the messaging has improved — but she's adamant that the narrative is nonsense. She points to organizations like the Dementia Action Alliance and the Eden Alternative, whose conferences put people living well with dementia on stage, year after year, recognizing their strengths and resilience. She's watched the same speakers thrive two years apart. She tells the story of a man who, through an exercise program called Rock Steady Boxing and deep involvement in that community, saw a Lewy body dementia diagnosis downgraded to mild cognitive impairment — and who now sometimes speaks alongside the renowned dementia educator Teepa Snow.
"It's not the brain we need to be fully human. It's our heart, it's our spirit, it's the energy we have to share with others."
— Marysue MosesShe doesn't gloss over how hard it is — for the person and for care partners both. But humanity, she insists, doesn't go away.
Just Say Hi
The heart of Marysue's approach is disarmingly simple: becoming someone's friend is step one. She learned it early, when she was still green in the work. Preparing snack time, she bustled over to a resident named Mona with an overly bright "would you like coffee or lemonade?" Mona looked at her and said three words that Marysue has never forgotten.
"Just say hi."
— Mona, a lesson Marysue never forgotMona simply wanted to be recognized as a person. So much of good dementia care, Marysue says, is exactly what we already do for the people we love — getting on their side, validating their feelings, telling them of course you're frustrated, this isn't fair, I'm with you. She's seen the opposite, too: a care worker shouting across a room at someone with dementia. The alternative costs nothing. Say the person's name. Shake their hand, if they like that. Let them know you're not going to fade away.
Looking Past Dementia
Everything — the first book at five, the years on stage, the trunk, the training, her mother — folded into Looking Past Dementia, released the very day this episode was recorded. It's full of the stories she's gathered along the way: Mona, the man who reversed his diagnosis, the caregivers who did it beautifully and the ones who didn't. It carries one steady conviction: the person is still there, and connection is still possible.
Get the book — Looking Past Dementia by Marysue Moses (available from August 25):
More from the publisher: author page · Emerald Lake Books store
Why This Conversation Matters
What Marysue Moses has built over two decades — the programs, the training, the book — began with one daughter showing up for her mom and asking better questions than the ones she was handed.
As Amanda puts it in her closing: the person is always still there, connection is always still possible, and some of the most important work any of us can do begins with simply deciding to look past what's easy to see.
Who in your life is waiting to be met, rather than managed?
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