Julie Burger’s memory and cognition are slowly fading, but she has a plan for that.
Burger, 79, started to notice changes to her recall in 2013. Then in 2016 she was diagnosed with early-stage Alzheimer’s disease. Burger’s plan doesn’t necessarily involve a cure, although the Vancouver resident is participating in a clinical trial in hopes that it might yield something positive for herself or others.
Burger’s plan is more focused on having a good quality of life as her memory fades, and getting all her financial and legal affairs in order before she is unable to handle the details.
Matt Gannon, a program specialist with the Alzheimer’s Association Oregon and Southwest Washington chapter, said early diagnoses like Burger’s bring benefits, including the ability to do legal and financial planning, participate in scientific research, and structure your life in the way you want, while not scrambling to discover a diagnosis.
“Nobody wants to have to make major rushed important life decisions in crisis,” Gannon said.
Burger and her husband Les, 79, who live in Vancouver, have assisted the Alzheimer’s Association in a campaign with the Ad Council that focuses on the need to talk about recognizable changes in cognition and memory, and the need to discuss those changes with family and see a medical provider, who can provide a diagnosis.
Burger and her husband participated in a short advertisement, discussing their ” ‘Aha!’ moment.” The couple explain that Burger, who worked for 50 years with the American Red Cross and received the President’s Lifetime Achievement Award from President Barack Obama, used to breeze through entire books on four-hour flights. But her memory declined so much that she would read one page and have to immediately reread it because she couldn’t remember the information.
“We realized this is something we had to talk about,” Burger says in the ad.
According to Gannon, family and friends often notice these kinds of cognitive changes in people in the early stages of Alzheimer’s disease, but are afraid to speak about them. According to Alzheimer’s Association data, almost three in four Americans say that it would be challenging for them to speak with a close family member about memory loss or cognition problems.
Gannon said the fear stems from the unknowns around Alzheimer’s and other forms of dementia. Fear also arises from the fact that there is no cure, Gannon said. Some people act as though it’s almost better to ignore the symptoms because they’re worried that more knowledge of the problem is even scarier.
However, Alzheimer’s Association data reveal nearly nine in 10 Americans would want others to tell them if they were showing signs of memory loss or cognitive decline.
“The more you know the better,” Gannon said.
That has been the case for Burger. She can only read short articles now, and can’t follow a recipe anymore or do math — something she’d always been an ace at doing. She has also asked her three sons to come up with songs they can sing to her when they call so she can better remember them.
“My concern is I would forget their names and their faces. That would make me so sad,” said Burger, who also has six grandchildren.
But Burger is still enjoying a healthy social life, and using her diagnosis to be an advocate for those with Alzheimer’s. Burger lets people know when they start a conversation with her that she might not be able to carry on a normal conversation because she has Alzheimer’s. She’s usually greeted with a hug when she does that. Burger still enjoys puzzles, and goes out to lunch frequently with friends. She also sings in a local choir, and is active at Congregation Kol Ami in Vancouver.
“You shouldn’t just bury yourself,” Burger said. “There is a stigma attached to Alzheimer’s and when somebody finds out that they have Alzheimer’s they stop socializing. They don’t let anybody know that they have it, and that’s not me. I want everyone to know.”
Burger’s husband said her advocacy is about, “I’m standing up doing something. Now you do something.”
Her mother recently turned 103 years old, and she said her mother passed on positivity to her. Burger said even though a future with Alzheimer’s can be scary she’s going to make it the best future possible.
“Our attitude has always been, ‘We’ve had a great run,’ ” Burger said.