REX WILGUS: A cloud of unknowing

By Rex Wilgus/For the Monroe Journal

“Alzheimer’s is a national catastrophe,” Mary Nell Dorris said recently during an interview at First Friends, a respite center for patients with Alzheimer’s and their caregivers.
She’s exactly right.
I’m keenly that I walk around with all sorts of “misunderstandings” in my head, cultural or otherwise. Some are quite humorous and silly, good for a genuine guffaw – and I’m always good for a guffaw. But other misunderstandings are not so humorous, reminding me of how little I really know about the world I live in.
I’ve heard about Alzheimer’s most of my life, but only recently did I begin to listen. I knew that people with Alzheimer’s forget things and, in the later stages of the disease, require constant care. The reality of all that’s involved didn’t hit me until I visited the First Friends center and learned a little bit about caring for someone with Alzheimer’s. The facts and figures hit hard. It is, indeed, a national catastrophe. It’s also a familial catastrophe and a community catastrophe and, in many ways, a personal catastrophe.
Mary Nell, whose husband died of Alzheimer’s, told me that one of the first things her husband forget was her. She told me this without bitterness, commenting on how one needed to find the humor in a situation like that, how to “laugh in the face of catastrophe,” as Mary Chapin Carpenter once put it.
Mary Nell tells the staff and volunteers at First Friends to “Think T.R.R.” — patients with Alzheimer’s cant think, can’t remember, can’t reason. They can get up in the morning and forget how to make a pot of coffee. They can stare at a telephone and not understand how it’s used. They can sit in their own living room and not know where they are.
What a strange, frightening world it must be: to not know what’s happening, what’s going on, to not know the people who surround you, to look at a world full of objects like toasters and frying pans and not know what they are or what their purpose is, how they got there, who owns them, what should or ought to be done with them. It would be difficult to imagine a catastrophe that could be greater, because Alzheimer’s isn’t like cancer – you either beat it or you don’t. It’s not like a car accident or a tornado, from which you may or may not recover. It’s a long, slow goodbye into a dark, frightening world as your intellectual capacities fade and you are reduced to a state of helplessness in a world that makes no sense.
Patients with Alzheimer’s “forget” — but it’s not quite that simple. It’s not like forgetting a phone number or an appointment. In its later stages, the body “forgets” how to eat. Limbs forget how to operate, how to function. The throat forgets how to swallow. In many ways, Alzheimer’s patients “forget” how to live. Which is why Alzheimer’s is the #6 killer.
To be so ignorant of such a major issue amazes me, and not in a good way. Yet there are so many issues about which I have some idea, some initial thoughts, some intellectual understanding, but which I don’t really “know” and can’t really grasp. Even as I try to absorb the reality that is Alzheimer’s, I’m keenly aware that I will never have more than a surface understanding. Only someone who has spent years in the trenches fighting it, like Mary Nell, is qualified to say anything intelligent about it. Certainly not me.
When I was young, I knew everything, of course, as most kids do and as my teenage son constantly reminds me. Now that I’m old, I realize I don’t really know anything at all, and even what I do know is but a small fraction of what we call “the world.”
Part of aging gracefully, it seems, is coming to terms with that uncomfortable fact of life.

Rex Wilgus is the news editor for the Monroe Journal. Email him at rex.wilgus@journalinc.com.