‘ To lose your memory is an awful plight
All I can do is put up a great fight
There is no shame even in defeat
It’s fighting the battle that makes you complete”
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– Lon Cole
When Lon Cole’s second book of poetry, “Alive and Thankful,” was published, he discovered upon opening it that the verse was all new to him.
“I’ll read my book, and it gives me a lift,” Cole said. “I don’t remember writing any of them, so they’re always new to me.”
Cole, 65, is a writer four years into a diagnosis of Alzheimer's disease, still able to find humor in a situation he can do little about. He hopes what he writes can cheer others as much as it encourages him.
On Thursday, Cole will have a booth at the Pierce County Alzheimer's Caregiver Conference at Tacoma’s Emmanuel Lutheran Church. Joining him will be another local author, Lakewood’s Patricia Woodell.
With two of her three sisters, Woodell wrote “Are the Keys in the Freezer,” a primer for families dealing with Alzheimer’s.
“We wrote the book because we had so many questions throughout the experience, and wondered why others should go through the same thing,” Woodell said in her Lakewood home.
“In our mother’s case, dementia started years before we suspected. Then we noticed common things she’d always done she couldn’t do.”
“In the kitchen, she might get all the things out to follow an old recipe, but couldn’t remember what to mix,” Woodell said. “It was as if you could put out the makings for a sandwich, but she wouldn’t know how to put it all together.”
Woodell and sisters Brenda Niblock and Teri Warner chronicle their mother’s journey and their own, detailing how to deal with assisted living and memory care facilities.
Along with the pain of their personal tale are suggestions on becoming a medical advocate for your loved one, finding hospice care and how to deal with death.
“No one will live forever, this I know
But most of us are in no hurry to go”
– Lon Cole
Cole has been fighting the good fight and living his life as best he can since his diagnosis, but remains honest with himself.
“I forget a lot more. I’ll be thinking of a thought, go to write it down and can’t remember it. That’s discouraging. I’ll go out into the living room to tell my wife, Cris, something and forget why I’m standing there.
“I try to tell myself, life is a gift. Move on.”
Cole remains at home in Puyallup, visited frequently by grandchildren who know his situation and are patient if he begins repeating himself or forgets where the car is parked.
What Woodell learned was that moving her mother from her longtime home to an assisted living facility only exacerbated her mother’s problems.
“Mom was so independent that assisted living made her a safety risk,” Woodell said. “They couldn’t legally stop her from leaving, they could only try to talk her out of going. We got a lot of calls at all hours and had to go find her.”
The move itself was devastating.
“What we didn’t know was that people dealing with dementia don’t handle change well,” Woodell said. “There was a rapid slide in her condition when she left her home and moved into a place where she didn’t know where everything was.”
Even at his home, Cole has become more reclusive. He finds his office feels safe and will spend hours there, sometimes staring into space. The poems that used to come quickly now take a day or two, he said.
“Sitting at my computer feels like my last battleground,” Cole said. “I enjoy being with people. I was in Redmond the other night for a poetry reading, and afterward we talked about Alzheimer’s.
“The thing is, most of what they’re just learning, I’ve been through. If I can help, I do. That’s why Patricia is going to the conference. It’s why I’m going. If we sell books, great, but we’re there to talk to people.”
What they want to share goes far beyond the technical details.
“It’s important to understand, you’re saying goodbye to someone you love sooner than you expected, and a little at a time,” Woodell said.
Sometimes, Cole said, there are far more questions than answers.
“What will I treasure
When my senses are gone
Will others connect
Or will they move on?”
– Lon Cole