Stories can conquer fear, you know.
They can make the heart bigger.
— Ben Okri, Nigerian Novelist
As we age, many of us — as patients or caregivers — will grapple with Alzheimer’s disease or dementia, frightening conditions that result in memory loss, cognitive decline, confusion and, often, erratic behavior. It’s estimated that 50 percent of people over the age of 85 will develop Alzheimer’s or other forms of dementia. In 2012, more than 5.2 million Americans had Alzheimer’s. To date, there is no cure.
My family was pulled into the maelstrom when my mom, at age 89, began experiencing memory loss. Over the next four years, this bright, quick-witted woman with an encyclopedic memory became increasingly confused, erratic and delusional. My sister, Cathy, quit her job to live with mom and care for her full time. Cathy cared for our mother through frustration and agitation punctuated by trademark bursts of humor and surprising expressions of wonder. Mom died five years ago at 93.
But Alzheimer’s disease also strikes about 200,000 adults younger than 65 each year, as Seattle journalist Collin Tong tragically learned. His wife Linda, a meticulous energy conservation analyst, first became forgetful at age 51 in 1999. Her condition declined, and she was diagnosed with younger-onset Alzheimer’s in 2005.
With the diagnosis, Tong retired early and took on Linda’s full-time care. He learned first-hand the enormous physical and emotional toll on caregivers. As he later reported, in 2012 alone, Alzheimer’s caregivers incurred $9.1 billion in health care costs of their own.
After the death of his wife of 40 years in 2011, Tong resolved to honor Linda’s memory and help other caregivers of those afflicted with Alzheimer’s. For four years he collected stories from a diverse cross-section of caregivers who shared their experiences in unflinching detail. The result is his moving new book Into the Storm: Journeys with Alzheimer’s (Book Publishers Network), an anthology of 23 accounts by caregivers who recounted their challenges and frustrations, their fears, their grief, their moments of joy.
Reviewers have praised Tong’s new anthology for its breadth, candor, vivid insights and compassion. Acclaimed former NPR health correspondent, Joanne Silberner, described Into the Storm as “powerful and moving” and added that she wished she’d had it when her father struggled with Alzheimer’s.
Tong is a Seattle-based health reporter for Crosscut.com and University Outlook magazine, and works as stringer for The New York Times. He is former senior director for westside communications for Washington State University, and former public affairs director at the Alliance for Education. He has also been honored frequently for his service to the community. In 2010, he was Volunteer of the Year of the Western and Central Washington State Chapter of the Alzheimer’s Association.
Tong, along with Ann Hedreen, Esther Altshul Helfgott, Connie Thompson and Bob Le Roy will speak on Alzheimer’s at the Elliott Bay Book Company in Seattle, at 3 p.m. Sunday.
Tong recently sat down at a café in Ballard to talk about his experience as a caregiver and his new book.
You write vividly about your wife Linda’s struggle with early-onset Alzheimer’s disease. What was the course of her illness?
When she was 51, she began showing symptoms. We were on vacation in France and I noticed she had forgotten to bring some essential items [such as] sun tan lotion, toothpaste, contact lens solution. Shortly after, her sister died, and Linda went into a depression and manifested memory problems.
About that time, I received a phone call from her supervisor at Seattle City Light, where Linda worked as an energy conservation analyst. She said she was repeating questions, missing appointments.
The consensus [then] was that she was suffering from depression. She was treated for depression, but her psychologist and psychiatrist said that they had never seen any previous examples of people who were depressed having such significant memory loss.
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