'Into the Storm': Alzheimer's, caregiving and the healing power of stories
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 'ê¨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.
I took Linda to two specialists for neuropsychological assessments [and other tests]. We received a call about a week later, and the doctor said, “I have some bad news. Linda has Alzheimer’s.”
My WSU job was very demanding and required long hours and travel to Pullman at least once a month. But now, I also had a second full-time job: caregiving. We couldn’t afford a live-in caregiver. It finally got to the point where I had to retire from my job to take care of Linda. For two years, I was her primary caregiver, which was very challenging.
[When] her condition declined further, I placed her in an adult family home and enrolled Linda at Elderhealth Northwest [now called Full Life] an adult day health program that was wonderful because [it gave] Linda a social outlet and mental activity.
Did Linda always recognize you?
Yes. That isn’t always the case. The average life span for younger-onset Alzheimer’s is eight years. Linda lived 12 years from the time [of her initial memory problems]. Her communication skills and cognitive abilities declined gradually.
About a year after she was placed in the adult family home, she lost most of her short-term memory, but she still recognized me. Up to the last days of her life in hospice care, the caregivers said, “When Linda wakes up in the middle of the night, she calls your name.” She would always greet me with a smile, and we’d hug and embrace. I would say “I love you” and she would say that back, or nod her head. I definitely knew Linda knew that I was there.
My mom wandered, got confused and had delusions about strangers in her home. Did Linda have similar problems?
There are some frightening stories. Linda liked to go to the University District Farmer’s Market. One Saturday morning in 2005 she got in the car about nine o’clock and said, “Collin, I’m going shopping now and I’ll see you shortly.” She wasn’t home by four. I almost called the police. What happened was that she shopped and she wasn’t sure where the car was parked. She was walking in circles for hours until a young man, probably a student, saw Linda and gave her a ride home.
She also had “sundowning,” which meant she wandered in the middle of the night. I had to be vigilant because I was afraid she might get into the medicine cabinet, or turn on the stove and start a fire, or walk out the door.
That captures how challenging caregiving can be.
When I became a caregiver I knew nothing about Alzheimer’s, and I had no idea of how this would change our lives. I needed a road map on what to expect and where to go for resources.
I didn’t know anything about the Alzheimer’s Association, and then I discovered their 24-hour Help Line. The person I first talked with was Karl Thunemann, a former colleague [at] the Eastside Journal-American in Bellevue. We talked for an hour and he was extremely helpful.
I started going to a support group in 2006. I was nervous because it seemed like AA where you have to spill your guts. One day, I ran into a woman from the support group and she asked how I was doing, and I said, “Actually, this is a depressing experience and it seems you guys have your act together.” She laughed and said, “We’re all depressed. We just hide it really well.” After that, I didn’t miss any meetings. The group became like a family.
What was most helpful for you, as the caregiver for your wife?
The most helpful thing was my community. My support system, the people in my church, my book club friends — guys I’d been seeing for 25 years. My family, too — although our families are in California, so they didn’t come up often.
Actually, for about two years, we dropped out of sight because we were so consumed with the pressing demands of caregiving. We had to set up a network so we’d have a safety net. It’s so vitally important: you need other people to get through this tough journey.
Self-care is extremely important. There’s an adage that, before you help the person next to you, you need to put on your own oxygen mask first. You’re no good to whoever you’re taking care of unless you’re healthy.
In the book, you write that “storytelling was at the heart of [your] journey with Alzheimer’s.”
I have an eclectic background. After college and the Peace Corps, I went to divinity school in Berkeley. I spent four years in seminary [at several colleges]. In 1989, I went to Berkeley for the summer session at the Pacific School of Religion. I had the late Professor Robert McAfee Brown, a nationally renowned theologian and ethicist, for a course on theology and storytelling. Theology really is about people and their lives. I [learned] that stories are sacred. Stories are powerful. Stories help us navigate through life’s most difficult times.
In the support group, [I had the] privilege to learn about the journeys of fellow caregivers.
Is that how Into the Storm came about?
In 2009, my friend, Seattle Times columnist Jerry Large, encouraged me to write about my caregiver experiences. Jerry and I had both trained at the Robert C. Maynard Institute for Journalism Education in Berkeley. In 2010, I took all my diaries and wrote a long piece for the Seattle Post Globe. It got a huge response. [A Crosscut editor] then asked if I’d like to write for Crosscut, and I’ve been writing ever since.
[The writing] sparked the idea that maybe I could put together a collection of stories of a broad cross-section [of caregivers] with all varieties of caregiving experiences. How about long-distance caregivers? How about African-Americans? Asians? How about gay couples? What about people from Boston, St. Louis, Chicago, Indiana?
There are a lot of clinical and scientific books on Alzheimer’s, and many fine memoirs, but I wanted small, first-person vignettes, to give snapshots. Like Jeanne Tripsansky in Indiana who took care of her mother. Or Babs Tatalias, who with her daughter Stefanie, cared for a husband she had been separated from for over 20 years. Or KOMO-TV news anchor and consumer affairs reporter Connie Thompson in Seattle who takes the train every month to Portland to care for her 86-year-old mother suffering from dementia.
I wanted to help caregivers who are just starting the process get an idea of what to expect, what it’s like to be a caregiver. [When I became a caregiver] I felt a profound sense of dislocation and loss. But, with stories about people also having a tough time, you don’t feel as quite as bad. And I wanted to honor the memory of my wife, so I am donating 90 percent of the royalties to the Linda Tong Endowed Memorial Scholarship at my alma mater, the University of Redlands.
What are some things you’ve learned since Linda died?
Seeing my wife go through the agony of Alzheimer’s raised my own level of consciousness. When the state threatened to cut funding for adult day health centers in 2009, I got involved in advocacy and rallied the people I know — particularly in the news media — to do more news coverage.
It made me appreciate at a spiritual and personal level the fragility of life.
Your book is praised as a service to caregivers.
When I started out, there wasn’t anything out there except memoirs by caregivers. Those are excellent, but most people don’t have time to read a 300-page book. I wanted the stories in my book to be interesting and short so you can read them in about 10 minutes [and] think about your circumstances and be a better caregiver. I asked each writer to be honest about their frustration, heartache and sadness. I didn’t want an Ozzie and Harriet version of the truth. The stories are all tragic but at the same time they’re all hopeful.
The other thing goes back to my theological training. Frederick Buechner, a theologian and novelist, talks about the “stewardship of pain.” All of us in life will face some adversity, whether a death or other tragedy. You can do one of two things, Buechner says. You can run from the pain, bury it and not deal with it, but you hurt yourself because you’re not growing. If you work through the pain, it will help you become attuned to the needs and pain of other people. It will be not only a source of healing, but also a powerful source of learning.
Pain and tragedy are tremendous teachers. I lost a brother to violent murder. I lost my wife to Alzheimer’s, and she had a sister who committed suicide. We all go through tragedies, but we can learn from those experiences and something good can come out of them. [Learning through tragedy] helped me to become more sensitive, more caring about the needs of other people who face these tragedies.
It also helped me to live life in the present. I was a typical, career-oriented guy. When my wife got the Alzheimer’s diagnosis, none of that mattered. We had been married 40 years and she was the love of my life.
It was a very powerful journey.