Peter Beeson had a new job, new marriage, new life.
He had left behind decades of mental health administration and academia to become associate director of the Nebraska Humanities Council, hoping to launch the literary career he'd fantasized about.
And then he hit a roadblock.
"I first noticed problems with not being able to find my way around places, losing the sense of north, east, south and west," he says.
When Beeson was diagnosed at age 57 in 2002, he turned to writing poetry to help make sense of what was happening to him, to hold onto his connections with a world increasingly distorted, says Teresa Stitcher Fritz of the Alzheimer's Association of the Great Plains.
"I thought I was unique," says a disappointed Beeson, now 60.
People are also reading…
"There's tons of Alzheimer's poetry."
Some people diagnosed early want to know what lies ahead. Others desperately avoid knowing.
Beeson has no choice. He holds a Ph.D. in sociology, was president of the National Association of Rural Mental Health and editor of the Rural Mental Health Journal and worked in mental health planning for the state. His resume runs 32 pages.
It's certain that at some point in his career he stumbled upon a place delivering Alzheimer's care badly, a warehouse of neglected, bored zombies reeking of urine.
Beeson steers the conversation toward the clinical. Alzheimer's, he says, will be a serious problem for the Great Plains because of its concentration of elderly people.
Yes, but what's it like to live with Alzheimer's?
He repeats the question slowly. "What's it like?"
"It sucks."
He's edgy, angry.
"These awards," he says, gesturing to the walls of his office, "They meant something, didn't they?"
With Alzheimer's, life is complicated, frustrating, stressful.
"It takes longer to do things."
To compensate, he sticks notes to his desk and types reminders into his computerized calendar. Bells will ring this night moments before his daughter, Mary, stops by for a visit.
He talks about how stressful Alzheimer's is for his wife.
He hesitates, then says, "In general, there's a tendency for caregivers to fall into the trap of treating you like you're working for them. 'Do this, do that, and don't forget to' … ordering you around."
It's hard to explain, he writes in one poem, How the ordinary wears you out … How bad it is.
So you're talking and you have a line of thought going down a path and then what?
"Usually, it's just gone," he says. "You don't know where you are."
You're watching a politician on TV, but you can't recall his name. You see people and places but can't quite name or place them.
The clinician in him can't describe how Alzheimer's progresses. To compare now with three months ago, he says, "That's just not there."
Early in the disease, people sense their decline. They may see only the shiny portion of the iceberg, but it sends chills.
Fear. Fear like that expressed by the paranoid HAL 9000 computer in "2001, A Space Odyssey" as astronaut Dave disconnects his mind:
"Dave … stop … stop, will you … stop, Dave … will you stop, Dave … stop, Dave … I'm afraid … I'm afraid, Dave … Dave … my mind is going … I can feel it … I can feel it … my mind is going … there is no question about it … I can feel it … I can feel it … I can feel it … (slows down) I'm afraid …"
Eventually, mercifully, the awareness of forgetting fades.
The forgetting advances on its own schedule, neither slow enough for Alzheimer's victims to complete their life's tasks nor fast enough for them to painlessly forget they existed.
There will be this in-between time. These days of frustration.
Unless another disease kills them first, Alzheimer's will progress beyond annoyance, eventually reaching incontinence and inappropriate behavior.
It's natural to wonder:
What will happen when I become a real burden?
Whose face will be the last one I recognize?
What will be the last coherent thought to go through my head?
What will be my last word, my "Rosebud?"
Without memory, wrote Ralph Waldo Emerson, who also had Alzheimer's, life and thought are an unrelated succession. Memory is the cohesion that keeps things from falling into a lump or flowing into a wave.
Today, Beeson rides onto that wave with his keyboard, writing mostly for an audience of one.
"The big thing is to finish the memoir," he says. "In some ways it's for my daughter."
From his works, it's clear Mary means everything to him.
She has gone off to Purdue University. And while it's sad to have her so far away, he says, "It will be good for her to distance herself from what's happening to me."
Good to be separated from what he most loves.
Beeson is like a Nebraska farmer watching the storm that destroys his crop. He may as well describe it with professional candor, and so Alzheimer's has become a part of his memoirs, titled "Distant Thunder."
It was Oct. 9, 2002, he writes. He lay in bed watching TV, flipping channels, ultimately landing on a program exploring "Early-Onset Alzheimer's Disease." The guy on the program exhibited some of the same problems he had, like forgetting where things were in the kitchen.
He snapped off the TV and tried to forget, "but it was there, like the sound of distant thunder."
In August, he'd written: "When I try to visualize my parents and my life with them, my growing up … it is all hazy and vague."
He picks up a birthday card he received from Mary, then 15, "I couldn't ask for a better dad … you're great. I love you. Mary."
Nine years had passed since he divorced Mary's mother. Two years since ending a seven-year relationship with a mental health therapist. He and his future wife were taking their first steps into a new relationship.
That October, he writes, he misplaced a checkbook and had to call the bank. Life at work had grown anxious. In December, he couldn't figure out how to get to where he had always purchased Christmas trees, couldn't recall it was in Hickman.
In mid-March 2003, chest pains sent him to the emergency room.
"False alarm."
At home there was a note from Mary: "Dad: I'm glad the tests went well. … I love you so much!"
The next day, he called in sick and lay in bed thinking.
At this point in the memoir, his thoughts flash back to 1974 and his work as ward charge in the Lincoln Regional Center. His story becomes a poem, titled: "Caring, By the Numbers."
"Mostly she is not there," it begins, "A shadow along the wall … We focus on other patients."
But on other days, she erupts: "Hellllllp Meeeeee. … Oh God, help me!"
They descend upon her, grow frustrated when she won't respond to their questions of "what's wrong."
For her sake, they "Attach the belts, Pull them tight …"
And then he sees them: "Numbers tattooed there," Auschwitz numbers.
"Why wasn't this in her chart?"
And then guilt overwhelms him. They had been more concerned with controlling her behavior than in providing her care.
Were they any better than the Nazis?
The memoir returns to the present as Beeson wonders: "Was I, in some anticipatory way, identifying with her fate?"
Knowing what lies ahead, could he possibly not imagine himself crying out for help in a world that no longer makes sense?
As he writes, combining memory with words to create insight, Beeson races the rot destroying both. Memory goes first, then words.
For now, he can share perceptions, show he has courage enough to look into the darkened stairwell where the bogeyman lurks.
