This post is the story behind Episode 1 of Navigating Dementia. Listen to the full episode here if you'd rather hear it than read it.
My grandfather's name was Steve, and for years he owned a little country store on Main Street in Limestone, Maine. If you needed milk, cigarettes, penny candy, or a scoop of ice cream, he was probably the one handing it to you. There was even a tiny candlepin bowling alley in the back, and I think he paid a kid five cents a day to reset the pins after every frame. It was the kind of place where everybody knew everybody, and Steve was right in the middle of it.
That store burned down years before I was born. But somehow, it still shaped my whole life.
When I picture my grandfather, dementia isn't the first thing that comes to mind. I see a quiet man with twinkling blue eyes and a grin that usually meant he was up to something. I remember sitting with him on an olive-green vinyl couch, eating sardines on saltine crackers (which, honestly, I would've rather had ice cream) and when we finished, he'd lift the cushion, sweep the crumbs under it, and put a finger to his lips like it was our secret. Because it was. My grandmother would have killed us both.
I remember the rhubarb patch behind the garage, and him snapping off a piece just for me, and my grandmother pouring a little cup of sugar so I could dip it and pucker up while he watched, grinning. I remember picking peas and green beans and apples in his garden, making applesauce afterward. He bought me my first pair of ice skates. Every now and then he'd slip me a dollar bill for no reason at all, just because he was kind. He wasn't a man of a lot of words. He didn't need to be.
I think it's important to say all of that before I say the next part, because it's easy for a diagnosis to become someone's whole story. Steve was a husband, a father, a grandfather, a shopkeeper, a gardener, a good neighbor, long before he was ever a diagnosis.
As I got older, things started to change. Some mornings he'd get up, put on his work clothes, and head for the front door, because the store wasn't going to open itself and customers were waiting. Except the store had burned down years earlier. I remember the adults saying he was confused. That was the explanation, and as a little girl, I accepted it, because I didn't know any different.
Years later, I understood something that changed the way I think about dementia entirely: my grandfather wasn't wandering around without a purpose. He knew exactly who he was. He knew exactly where he was going. The problem wasn't that it didn't make sense to him. It was that it didn't make sense to everyone else.
My grandmother Maddie loved him fiercely, and she carried the weight of it almost entirely alone, because asking for help wasn't who she was. She tried to explain, tried to reason with him, tried to convince him the store was gone. None of it worked, and I don't think what she needed was to try harder. I think she needed someone to help her understand what she was actually seeing in front of her, because once you understand that, everything changes.
I didn't set out to build a career in dementia care. I started as a physical therapist, working with people recovering from strokes and broken hips, and over time more and more of my patients were living with dementia. Even after all that schooling, nobody had really taught me how to answer the questions families were asking me: why does my husband keep trying to go to work? Why can't I just explain this to my mom? I couldn't stop wondering how that was still true, how families were still carrying the same confusion my grandmother carried decades earlier.
Somewhere along the way, I realized I'd been asking the wrong question too. Instead of "how do I make this stop," I started asking, "what is this trying to tell me?" That shift changed how I practice, how I talk to families, and how I look back on my own grandparents. I don't think Steve was being difficult, and I don't think Maddie failed him. I think they were both doing the best they could with the understanding they had. I think that's still true for most families today.
That's why I built A Better Way, not because I have all the answers, but because I believe families deserve better questions than the ones they've been given. Questions that move us from "how do I make this stop" toward "what is this change telling me." Whatever it is your person has started doing, or stopped doing, I believe it's telling you something worth paying attention to.
That's what this podcast is about. Let's find our way together.
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