from Witnessing Alzheimer's: A Caregiver's View, March 9, 2012
Esther Altshul Helfgott
I normally don’t use the word “soul,” but I will today because I’m trying to understand why people use the word “shadow” to describe what happens to the Alzheimer’s patient as he or she begins losing memory and functionality.
Let’s say there is such a thing as a soul, a fundamental essence, something that’s always within a person, regardless of what happens to him or to her on the outside – in terms of looks, behavior, or circumstance.
Let’s say we meet someone in life whose soul touches ours so deeply that even if the two don’t always understand each other on a day-to-day basis or get along with one another all the time, something inside of each stays connected with the other.
Let’s say one of these people gets sick in such a way that most people don’t understand him anymore. Little by little this sick person loses his knowledge about the past, about who people are, what his relationship was with them, even with his wife and children.
Let’s say he’s even forgotten what position he held in the world. In fact, one day he asks his wife: “What kind of business was I in?” His wife says: “You were a doctor.” “A doctor?” he asks in surprise. “Yes, you were a doctor.” “That’s nice,” he says, and goes back to looking at a picture book.
Would you say that this man is a shadow of his former self? I wouldn’t. I’d say he was stricken with a disease that erased his memory and that this erasure stripped him of the capacity to live life the way he used to. He is not a shadow. He is who he always was; he’s just living differently now. His outside self, the one the world sees, has changed; but the inner self, call it a soul, is there. Take time to look. If you choose not to, or if you can’t, that doesn’t mean you’re looking at a shadow.
I never saw Abe as a shadow of a former self. To me, he was Abe until the moment he died. He might have lost his memory, his executive skills, body movements and a host of other things, but if there is such a thing as a soul, Abe’s was intact.
We’re all looking for the “right” way to be around Alzheimer’s. We’re searching for appropriate words to use, but language is difficult. We need to choose words that don’t diminish a person’s essence, that don’t make him or her less on the inside than he or she still is.
This morning’s New York Times included an article about the writer Jeanette Winterspoon (Arts, C31). She writes: “Whatever is on the outside can be taken away at any time. Only what is inside you is safe.” We need to keep people diagnosed with Alzheimer’s safe, especially from humiliation. People living with Alzheimer’s are not shadows. Let’s not make them so.
Thanks for stopping by,