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'Into the Storm': Alzheimer's, caregiving and the healing power of stories

When his beloved wife, Linda, was diagnosed with early-onset Alzheimer's, Collin Tong became her full-time caregiver. Since his wife's death, Tong has edited a collection of stories written by a diverse group of caregivers.

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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.


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