Electa Anderson and her husband Norm pose at their daughter's wedding. Anderson is fighting to raise understanding of Alzheimer's after Norm passed away from the disease in 2006.
Ballardite fights for greater understanding of Alzheimer's
When Ballard native Electa Anderson's husband Norm was diagnosed with early onset Alzheimer's disease in 1999 at the age of 56, she became aware firsthand of the misconceptions and lack of understanding associated with the disease.
"Something as simple as going to dinner and reading the menu for them and ordering for them and having the waiter looking at you like you are trying to run your husband's life," Anderson said.
She said people who do not have to deal directly with those suffering from Alzheimer's make wrong judgements about the situation. They see someone who still looks normal and healthy despite the loss of memory and body function, she said.
Anderson said the husband of a friend of hers was diagnosed with Alzheimer's when he was in his 40s. Eventually he had to have his driver's license taken away. He was still mentally aware enough to complain to friends, and they nearly sued his wife for guardianship because they were convinced she was mistreating her seemingly normal husband, Anderson said.
"You try to treat them with dignity, then things get turned upside down," she said. "Family and friends don't get that. They are still seeing someone who looks normal."
Anderson is a member of the National Alzheimer's Association Western and Central Washington Board of Directors. She is organizing an event July 20 at the Chihuly Boathouse to raise understanding of the disease and the monumental consequences it can have for coming generations.
She and Norm, both Ballard High School graduates, were married for 42 years. Both their grandparents came to Ballard from Norway.
After five years of caring for Norm in California, Anderson decided to return to Ballard to live with his mother in the house Norm grew up in.
"I felt it was an amazing gift to have him return to his childhood home where he could feel familiar during his end-stage Alzheimer's disease," she said.
Returning to Ballard not only gave Norm some sense of familiarity with his environment, but allowed him to reconnect with high school friends he had not seen in many years, Anderson said. They would take him out for lunch or to play basketball to giver her some time off, she said.
Caring for a loved one with Alzheimer's can be incredibly stressful, both emotionally and financially, she said.
People with the disease suffer a loss of memory and body function, Anderson said. The brain is no longer able to tell the body how to properly function.
She said before anyone makes a judgment on how someone is handling the care of someone with Alzheimer's, they need to read "Jan's Story" by CBS anchor Barry Petersen. Petersen, who will be in attendance at the July 20 event, wrote the book about his wife, former Seattle KIRO anchor Jan Chorlton, and her battle with Alzheimer's.
Anderson said "Jan's Story" is the most accurate account about a couple's journey when one is diagnosed with Alzheimer's that she has ever read. The difficult thing is your loved one with Alzheimer's looks the same, but they are not able to process information and you lose the ability to communicate as a couple, she said.
Norm passed away in 2006, but Anderson still lives in his family's Ballard home.
She is committed to raising funds for Alzheimer's research and for programs for families facing the disease. She said she wants to raise awareness for the disease that has become a national crisis.
"I feel, as a caregiver for Norm, that I have been witness to a disease that will ravage the baby-boom generation," Anderson said.
She said Alzheimer's is perceived as an older-person's disease, but it is the younger generation that will have to deal with the incredible financial fallout and caregiving burden caused by it.
Alzheimer's costs Medicare, Medicaid and businesses $177 billion per year nationwide, she said. Those costs to businesses come from employees who have to leave work because they have been diagnosed with the disease or because they have to care full-time for someone who has been diagnosed with it.
"People in the mainstream – at the pinnacle – of their career are no longer able to work," Anderson said.
She said Alzheimer's will have a huge impact at the personal, community and corporate level in the next decade, and it doesn't resonate with people and corporations how important it is to put the work in now to prepare for it.
The National Alzheimer's Association can provide education through programs and support groups on how to support loved ones diagnosed with the disease, Anderson said.
She said she wants to create quarterly corporate roundtables to talk about the disease. A lot of times corporations will choose to give to a children's charity over an Alzheimer's charity because they figure people with Alzheimer's are old and are going to pass away anyway, but the children are the ones who will inherit the financial and caregiving responsibility of the disease, she said.
Anderson said her dream would be to sit down with Bill and Melinda Gates and Paul Allen, who announced July 15 that he plans on leaving most of his $13.5 billion estate to philanthropic causes, and discuss the Alzheimer's crisis.
"The more awareness we raise, the more people will understand the disease," she said. "There's a long way to go to get understanding and to get people to stand up for this cause."