- Written by Saralee Perel Saralee Perel
“What’s the word for the thing we use every day that has a monitor and a keyboard?” I asked my husband, Bob.
That question was not a test. It was part of a word-finding teaching program that Lee, Bob’s speech therapist, has taught us to practice.
“A computer,” Bob said. Elated that he got it right, we gave each other a high five.
“Want to keep going?” I asked.
My husband is so very brave. “Sure,” he said.
It stuns me that we’re at this stage.
“OK,” I said, showing him a picture of a camel. “What is this called?”
He thought for a moment. His shoulders drooped when he said, “I don’t know.”
Lee taught us about clues. She said, “The words are still there. It’s like a well, and the word is at the bottom. You just need a line to pull it up.”
So I said to Bob, “It starts with a C.”
I waited until he asked me for another clue. “It lives in the desert.”
Still nothing registered.
Ten years ago Bob began having memory problems, the most obvious of which was word-finding.
Our first neurologist was a smug know-it-all. Bob passed the neuropsych paper and pencil testing just fine. As I began to speak of the varied problems I’ve noticed at home, the doctor wouldn’t hear a word of it.
And so, nothing was done.
The second neurologist sped through the appointment. He also wouldn’t/couldn’t allow any time for me to speak. He ordered an MRI. The results were seemingly normal, though we were told differently, eventually, by a doctor who had the time to examine the films more closely.
And so, nothing was done.
One day it made me cry (silently) when I heard Bob on the phone, stuck on a word I could tell would be “blizzard.” I quickly wrote it on paper, and then rushed the note to him. There just had to be a better way than this.
In the middle of the night, a vicious beast I call “the future” hovers directly over me.
I have an attitude when I’m told that nothing can be done. It just makes me all the more determined to find answers. What else was I going to do? Give up? Why would I?
We went to three more neurologists until we finally found one who actually asked to hear from me. He said, “How can I know what’s going on when the patient can’t remember?”
He specializes in Bob’s diagnosis. Along with cognitive memory impairment, he has primary progressive aphasia, which essentially involves word loss.
The doctor recommended medication that has helped tremendously. He was the one who referred us to Lee. Yet, this doctor’s greatest gift to us? Hope.
You know how you often can’t remember what you did last week? Or even just yesterday? There’s a cure for that. With Lee’s advice, Bob keeps a calendar in which, daily, he writes down what he’s done. He reviews it again and again.
There aren’t many people I know who can remember things they did last month. But my sweet husband can.
Bob used to avoid socializing for fear that he’d lose common words. When inevitably that would happen, he’d so sadly and desperately look to me for help. He felt humiliation and shame and embarrassment.
Now, he still looks to me for help, but you know what? He could not care less. We’ve learned that if anyone thinks less of him for not knowing a word, then they’re probably not tolerant of others as well and certainly not the kind of person we’d want as a valuable, trusted friend.
We’ve learned that acceptance doesn’t mean hopelessness. We’ve learned that inevitable doesn’t have a definite date. Inevitable doesn’t mean giving up.
You know what it means? It means it’s fight-back time!
Bob never did come up with the word “camel” that day. But that doesn’t matter. As long as he can say, “I love you,” then he’s remembered everything that’s important.
Award-winning columnist Saralee Perel can be reached at firstname.lastname@example.org or via her website: www.SaraleePerel.com.