The middle-aged man walks onto the stage and pulls out a chair. The audience watches in silence as he drags the chair to the back of the stage, positions it in the corner and sits on it. His back facing the audience, he begins.
“My name is Brian. I have Alzheimer’s, but it doesn’t have me.”
He describes how his life has changed since his diagnosis. Friends melted away, his wife left him, and he’s no longer able to keep his dog. He falls several times a week, gets lost and needs cue cards in order to give his talk. The worst difference, however, is how people treat him. Well-meaning, even loving people, talk about him as if he isn’t in the room. They are awkward and don’t know how to interact with him. They talk down to him. He says it makes him feel like a naughty child relegated to the corner.
He has lost his status as an adult.
I heard Brian speak this last week when I attended the 9th Eden International Conference. I was riveted as he described, not so much what the disease was doing to him, but how people’s reactions were affecting him and making him feel.
We can do better.
We spend so much effort talking about the terrible disease which is Alzheimer’s and focusing on the losses experienced by the person with the diagnosis, we risk losing the person inside.
We risk losing the person inside.
What did Brian mean when he said Alzheimer’s didn’t have him?
He meant that although the disease produced changes in his life, it didn’t change who he is at the core of his being. He is still a valuable person with purpose. He can contribute to the lives of others. Who he is, what he likes, his opinions still matter. He can make choices and decisions based on his preferences. He can grow and develop and have meaningful relationships with others. He has as much to offer as the day before his disease was diagnosed.
As care partners, there is a danger of taking over. When our loved one comes to a place where they need help, it’s tempting to make decisions that aren’t ours to make, to perform tasks we aren’t needed for and to steamroll over the identity of our elder.
Until you see a grown man sitting quietly in the corner…
CLICK TO TWEET