When Les Burger calls his wife’s cellphone, he doesn’t identify himself by name. Instead, he sings.
“You are my sunshine, my only sunshine.
You make me happy when skies are gray.
You’ll never know dear, how much I love you.
Please don’t take my sunshine away.”
While names escape her more and more lately, Julie Burger never struggles with song lyrics. And when Les sings the lyrics to the song that Julie has mentally linked to him, she can quickly identify her husband of 57 years.
Julie was diagnosed with early-stage Alzheimer’s disease in March 2016.
“We kind of knew from Julie’s symptoms that this wasn’t just getting old,” Les said.
Becoming an advocate
Julie first started noticing cognitive changes in 2013.
She had a photographic memory. As a student, she rarely studied for exams. But, suddenly, recalling information was becoming more difficult. She was also struggling to do basic math.
“I was a math major, and I can no longer add, subtract or multiply,” Julie said.
Julie kept the troubles to herself, but soon Les, a retired physician, started to notice her cognitive problems.
“Everyone forgets their keys,” he said. “You don’t forget how to turn off the lights in your car or how to add or to subtract or to write a check.”
In June 2015, a neuropsychologist performed an assessment and diagnosed Julie with mild cognitive impairment. An amyloid PET scan a year later resulted in an Alzheimer’s diagnosis.
While the Burgers had suspected Alzheimer’s, they didn’t know much about the disease.
“The reason I want to be an advocate for this is because I really was an educated person, I traveled all over,” Julie said. “And I never heard the word Alzheimer’s.”
Julie, 78, grew up in Puerto Rico. There, she said, dementias were just considered part of getting old.
But, armed with the diagnosis, the Vancouver couple started researching what to expect in the coming years. They had the tough discussions with their three adult sons and daughters-in-law. They began making plans for Julie’s future.
“At some point, I may have to go into assisted living,” Julie said. “You can’t wait until the last minute (to plan).”
“I want to be a part of the decision-making,” she added. “I think I can function well, I just need a little help remembering.”
Some memories fade
While Julie’s short-term memory is mostly affected, her long-term memory still fares well.
“Julie will pull some things up that we haven’t thought about for 50 years,” Les said.
But there are some important memories and milestones that Julie has lost.
“I don’t remember nursing my sons,” she said. “I don’t remember our wedding.”
Julie was always a voracious reader of novels. But she had to give them up because she forgets the storyline after reading a page.
“So now I have a subscription to Reader’s Digest because they all are one-page stories,” Julie said.
Julie is still driving, but she has made concessions. She doesn’t drive at night to an unfamiliar place, and she’s promised to call Les if she ever struggles to operate her GPS. She also uses a cellphone app, Life360, that allows Les to know Julie’s location at all times.
“The biggest issue for me and people trying to help,” Les said, “is to find the balance between safety and independence.”
Julie takes two medications to help with memory, and she’ll soon begin a clinical trial for a new drug. She stays busy with brain puzzles, exercise and social activities. She also tries to keep a positive attitude about her diagnosis.
“When I was diagnosed with this disease, I started keeping a list of all of the positive things with having Alzheimer’s,” Julie said. “And you know what? There are some.”
For starters, Julie said, she’s had more hugs in the last year than she ever recalls having the rest of her 77 years. She’s also made family time a priority, taking trips to see her children and six grandchildren in Texas and Virginia.
She and Les have also taken an active role with the state chapter of the Alzheimer’s Association, advocating for research at the Capitol, speaking at support groups and hospitals, and serving on panels for local community organizations.
“Lots of people out there don’t know a lot about Alzheimer’s, and there’s a stigma,” Julie said. “I try to be a model.”