Diagnosis devastates families

Keeping track of hundreds of details was all in a day’s work for Amy Shives. For 27 years she served at Spokane Community College as a nursing/allied health counselor. She juggled student appointments, class schedules and financial information with ease – until suddenly it was no longer easy.

Names and numbers slipped her mind. Her forgetfulness alarmed her. She thought it must be stress, or maybe she just needed a vacation. But last summer, Shives received a devastating diagnosis: early-onset Alzheimer’s disease. “I’m 54,” she said. “People look at me and say, ‘You’ve got to be kidding. You’re too young.’ ”

But she’s not. Early-onset Alzheimer’s (affecting those younger than 65) accounts for up to 10 percent of Alzheimer’s cases.

Shives reluctantly retired. “Not only could I not afford early retirement – I wouldn’t choose to.”

Her job was just the first thing the disease took from her. She described the difference between forgetfulness and Alzheimer’s this way: “You can’t find your car keys – I can’t remember what keys are.”

She now serves on the board of the Inland Northwest Chapter of the Alzheimer’s Association, and she is hoping for a big turnout for the 12th annual Nancy Rockwell Gala and Auction on Saturday. The gala honors the memory of Nancy Rockwell, who suffered from the disease and died of hypothermia in 1999, after getting lost on her way home from a South Hill health club. All proceeds raised at the event go to fund Alzheimer’s research and the local Alzheimer’s Association.

“There is no cure,” Shives said. “And it’s a fatal disease.”

Leslie Woodfill understands that well. Six years ago her mother, Lorrie Rae, was diagnosed with a form of Alzheimer’s called dementia with Lewy bodies. “It’s a mix of Alzheimer’s and Parkinson’s,” Woodfill said.

Her mother’s decline has been heartbreaking to watch.

“She did the Walk to End Alzheimer’s with me in September 2010,” Woodfill said. “By October she had to use a walker. By November she was in a wheelchair. By January she was in a hospital bed.”

Although her mom is now bedridden, Woodfill’s father is caring for her at home. Woodfill said, “She always knows my dad. He’ll walk into the room and her eyes light up – her face brightens.”

She pointed to a picture on her phone of her parents dancing together at the Nancy Rockwell Gala three years ago. Her eyes filled with tears. “Things changed quickly.”

Shives can identify with how Alzheimer’s devastates the lives of families and patients. “I’ve noticed a steady decline,” she said of herself.

For instance, recently she waited for her husband to pay for their purchases at Wal-Mart. She took out her phone to call her daughter. “Suddenly, I had no idea how to use it,” Shives said. “It’s a simple phone, but I didn’t know which icon to push. Every day I lose something. Every day something different is gone.”