Silence Is Not Golden When It Comes to Alzheimer’s

Silence is golden. We’ve all heard that phrase. In the midst of a world that is loud and hard to understand at times, we often crave silence. Whether at home or at the beach with only the sound of the waves as company. Perhaps at a spa or in the woods, walking along a tree-lined path.

There are times though when silence isn’t golden. This is particularly true with Alzheimer’s. Too often, as it steals memories, it also steals voices. There is a certain stigma with the disease. As if there is shame in forgetting, or being forgotten.

Poet and teacher Clint Smith said something in a TED talk that resonated with me in a profound way. “We spend so much time listening to things people are saying that we rarely pay attention to the things they don’t.” I wrote it down. I replayed his words. I read them out loud to myself. Each time, I could hear the message thrum in my heart.

When he spoke, Mr. Smith was referencing ignorance and injustice, but for me, the statement is equally applicable for Alzheimer’s. It is a disease that is spoken about in hushed tones if it is spoken about at all. I’ve heard too many stories of families who told no one about a diagnosis.

When I wrote What Flowers Remember, I was shocked to learn that it was one of only a handful of novels for children ages nine to thirteen that dealt with Alzheimer’s. Even more surprising were the conversations I began having with friends. It was as if a secret password had been spoken. I’ve been forgotten too. And that was all we needed to kick start the dialogue.

People I’d known for years suddenly spoke up, sharing their experiences with the disease. We traded stories, and fears, funny moments and terrible endings. But why hadn’t we talked about it earlier? When we might have helped each other cope?

I’m not sure.

I lost my Grandfather when I was in my early thirties. And he lost me. I’ve written about it before. And I keep writing about. Why? Because it is impossible to understand how someone you love, who loves you so much in return, can forget you.

Reading helps. Talking helps. Community helps.

Through all of those things we begin to heal. We laugh and cry, realizing that we aren’t the only one who has experienced the pain. Our conversations put an end to the isolation and stigma that Alzheimer’s can bring.

So let this be the month we begin to share. Let’s start creating that new language. Together, our voices can stamp out the stigma of Alzheimer’s. Shout it from the rooftops. Sing from the rafters. Talk with those you know. Someone will thank you for it. And you may find yourself healing too.