“Mom won’t sit in that room, she won’t stay there,” I said to the Director of Nursing (DON) in the autumn of 2012 when she showed me the room the person in control of my mother’s care had chosen for my mother.
“Oh, she’s a wanderer,” the DON smiled at me over her shoulder. “We know how to handle them.”
A wanderer? I didn’t know what that meant. I knew Mom loved to be on the move, that she rarely sat still, that she had been like that her entire life: a go-getter, a force to be reckoned with, the life of the party; she had boundless energy. I found the DON’s word curious. Had I known then what I know now, there would have been a fireworks’ of red flags. But I didn’t. I trusted the DON, who claimed to be an expert. What a mistake placing my trust in her would prove to be.
I didn’t understand what she meant by “handling them” either. I didn’t know that being labeled “a wanderer” would lead to my mom being sedated with antipsychotics to the point where she could no longer stand, let alone walk. I didn’t know how the behaviour of people with dementia is misinterpreted and misrepresented, and that as a result many are medicated into compliance for the sake of convenience and cost reduction. I never dreamed my mother would be physically and chemically restrained, both of which are forms of abuse.
I didn’t know then. But I know now. And every time I see the words “wanderer,” or “wandering,” “elopement,” or “exit-seeking behaviour” I want to scream: “Don’t you see? People who live with dementia are just like you and me. They want to be free, not chained. They want to live with purpose, not pity. They want to participate in life, not be sidelined!”
Sometimes my anger and frustration get the best of me. Today is one of those days. I wish people would ask more questions and come up with better answers.
P.S. Dear everyone who uses pejorative and damaging labels to describe the behaviour of people who live with dementia, PLEASE STOP. Thank you.