Unspeakable…

What can't you say about dementia today?

In our introductory post on Unspeakable, a blog about home and family caregivers of people with dementia, I want to start with a very short poem by one of the greatest American poets, Robert Frost.

The Secret Sits
We dance round in a ring and suppose,
But the secret sits in the middle and knows.

That perfectly describes “the unspeakable” in two simple lines of verse. We all dance and make nice: there’s an unspoken agreement to avoid uncomfortable discussions about dementia-related behaviors. We’re not supposed to talk about how grandmother has reverted to the racism she grew up around as Alzheimer’s disease robs her of the kind and tolerant person she has become. We avoid the discussion of how your husband with Parkinson’s thinks he’s 25, goes looking for his young wife, and grabs the caregiver’s butt. Every. Single. Day. We don’t talk about the horrible intrusive thoughts that make us feel like we’re terrible people: “when is she going to die already,” “I wish I could just leave her in a shopping mall and drive away,” or “maybe I should just give him the damned car keys back and tell him to go for it!” (There’s a post coming soon on these intrusive thoughts, by the way.)

The secret sits in the middle and knows.

Whatever your secret is, you’ve got good reasons for keeping it to yourself. Maybe it’s rude. It makes people uncomfortable. We don’t want to admit it to ourselves. “Outsiders” don’t want to hear about it. And on, and on, and on. But this blog is a place where we’re going to talk honestly about the secrets we all dance around.

In recovery programs like Alcoholics Anonymous, there’s a saying: you’re only as sick as your secrets. The things we don’t talk about eat us alive. But when we talk about them, we take the power back. This blog targets those secrets and gives us all a space to know that we are not alone in our problems.

In this space, we will speak the UNSPEAKABLE.