Wednesday, September 2, 2015

Writing Alzheimer's: Tanya Ward Goodman & B. Lynn Goodwin

Alzheimer's and other forms of dementia have affected innumerable lives, including my own. My mom, a writer and a nurse, wrote about her dementia as her capacities diminished. And I wrote about my caregiving experiences in my journals, in innumerable emails to loved ones, on this blog--and ultimately in my memoir.

What is it about the intersection of illness, caregiving, and writing?
I recently read two books that address the creative fire's role in grieving, loving, and healing. I also spoke to both authors.

Tanya Ward Goodman writes in Leaving Tinkertown about the simultaneous decline into dementia of her father and grandmother. Astonishingly, the book isn't dreary. It's permeated with love and resilience.  As Tanya said, "Alzheimer’s disease is a huge tragedy, but my family emerged intact. We continue to love and create and connect and that is not a downer."

In the book, the portrait of her father made me wish I'd known him. Ross Ward was a "consistently creative person," said Tanya, a man whose "curiosity and enthusiasm about the world was contagious."

He was a unique thinker and a free spirit who built Tinkertown Museum, a roadside attraction outside Albuquerque, New Mexico.

In the book, Tanya explores the awful losses associated with dementia--but she also addresses how some of the changes can be surprisingly positive. Her father's "sense of wonder and excitement was in some ways deepened," and she describes the disease as "loosening" her grandmother. I found this to be true for my mom, too. As she lost her language, I was able to massage her and hold her in ways she might not have enjoyed before. We developed a new kind of closeness.

Tanya said that spending time with her dad and grandmother encouraged her "to slow down. At the beginning, this was incredibly hard" because of all that caregiving requires. "Eventually, though, I let myself go along with Dad and Gran as much as I could. They relaxed because we weren’t always correcting them or trying to force them to remember and we benefited from the intimacy."

Tanya Ward Goodman (photo by Doug Piburn)
She added that with her father, "it was fun to gather rocks or watch the dogs sleeping in the sun. We spent a lot of time going over his scrapbooks. He’d tell me the same story again and again, but it was comforting to us both. As his disease progressed, my operating mantra became, 'why not?' I indulged him. It wasn’t going to kill him to eat a pint of ice cream for dinner. It wasn’t going to break the bank to buy a roll of sparkle stickers. Sure, we didn’t need more art books, but they made him happy, so why not?"

I was especially struck by her take-away: "I try to continue to live this way. Life is short. Spend real time with the people you love. If you want to do something or go somewhere and you can figure out a way to make it happen, why not?"
Tanya didn't set out to write a book. At first she wrote essays to sort through her feelings. She also kept a sporadic journal and wrote long emails to her boyfriend. Later, she sorted through all of that and the book emerged. 

"I kept asking myself 'what is the story? What is my story?' To that end, my biggest advice to memoir writers, or any writers for that matter, is to keep writing. Write everything you can think to write and then pare it down. Getting lost is, for me, a way to find a true path."
Whether or not you are going to write a book, B. Lynn Goodwin--author of You Want Me to Do What?: Journaling for Caregivers--encourages caregivers to write because "writing relieves stress rather than creating it. It allows a caregiver, or anyone, to vent without hurting someone's feelings." Writing, said Lynn, can help us see that we are not alone. It allows us "to process, dig deeper, get to the truth, plan strategies, and find solutions." Lynn pointed out that caregivers are not the only ones who can benefit. Her book could easily be titled, Journaling for Everyone.

B. Lynn Goodwin
I like the book's evocative prompts, such as: "Today I hope...", "I can barely remember...", "I lust after...", "Chocolate always...", "My life changed when...", and "At the edge of my heart..."

"If you start with a prompt, you never have to face a blank page," said Lynn. You can "finish the sentence and let the writing take you wherever you want to go or need to go."

Writing helps us grapple all that it means to be human. And in the very act of writing, we feel the power of its generative force. It is life giving.

Tanya Ward Goodman writes for The Next Family and lives in Los Angeles. She is working on a novel about becoming a mother. Visit her website.

B. Lynn Goodman is the owner of Writer Advice. She conducts workshops and writes reviews for Story Circle Network. Her young adult novel, Talent, will be out November 1, and she is currently working on a memoir about getting married for the first time at age 62.

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