EUGENE, Ore. — While Rhonda Frazier’s friends from Churchill High School’s class of 1990 were starting careers, getting married and having children, her parents were mystified as they watched their daughter struggle to direct her own life.
“We just thought she was making stupid choices,” Dawn Frazier said. “We didn’t know.”
Dawn and her husband, Doug, first noticed something was wrong soon after Rhonda graduated from Harding Christian University in 1994. With her degree in fashion merchandising in hand, Frazier moved to Denver to work in a retail clothing store. It was a dues-paying kind of job; the Fraziers expected her soon to be promoted.
“She worked every summer since her sophomore year (at Churchill),” Dawn Frazier said during a recent visit to Eugene. Self-directed, smart and capable, she seemed headed for a bright future, her mother recalled. She remembered how, at Lane Community College in the early 1990s, Rhonda Frazier enrolled in a music program that enabled her to play flute with the University of Oregon marching band. Dawn Frazier liked to think of how her daughter looked, marching in uniform across the field at Autzen Stadium, head held high.
But just a few years later, Rhonda Frazier had lost that assurance. She lost that first post-college job, too.
“She couldn’t remember how to work the cash register,” Dawn Frazier said. The young graduate fared no better at waitressing; she couldn’t master the computer-assisted system for entering food and drink orders.
The Fraziers were concerned but not frightened. Many people have trouble learning new technology. And who doesn’t struggle a little with short-term memory, they reasoned.
But Rhonda Frazier’s problem was anything but ordinary. She represented the fraction of a percentage of Alzheimer’s patients who contract the disease in their youth.
Dawn Frazier shared her daughter’s unusual story at the urging of Rhonda Frazier’s former classmates from Churchill. She said she also wanted to help people who know as little about Alzheimer’s as she did — until it hit home.
Researchers have many unanswered questions, too. No one knows what triggers Alzheimer’s, which attacks the brain and gradually destroys its ability to function. Although about a third of people in their 80s contract Alzheimer’s, it is not a normal part of aging. There is no known cure; the disease is fatal.
The first thing noticeably affected is the ability to learn new things; short-term memory lapses, too. The familiar gradually becomes strange. Education, memories and even the closest friends and family are forgotten. Death comes when the brain no longer can signal the body to perform basic life functions.
“People think that if they lost their keys, they have Alzheimer’s,” Dawn Frazier said. “But a person with Alzheimer’s doesn’t recognize what a key is.”
It took less than 10 years for Rhonda Frazier to reach that stage.
In 1997, the Fraziers moved from Eugene to Wenatchee, Washington. Rhonda Frazier left Denver and began a series of moves between Eugene, Wenatchee and Seattle. Her life increasingly was marked by aimlessness and confusion.
“She would lose her purse,” Dawn Frazier said. “One day, she lost her driver’s license.”
Alarmed by her inability to drive safely, the Fraziers disconnected her car battery.
A medical mystery
Doctors, neurologists and counselors all interviewed Rhonda Frazier, trying to pinpoint the cause of her cognitive problems. Sometimes the experts criticized her parents.
“They said we were holding her back by refusing to let her drive,” Dawn Frazier said. “She was an adult, so of course they were listening more to her than to her caregivers.”
But the Fraziers could see what the doctors could not: Their daughter steadily was regressing into childlike helplessness.
One day in 2001, she phoned her mother in Wenatchee, terrified and in tears.
“She said, ‘I don’t know where I’m at.'” She was in her Seattle apartment.
Dawn Frazier jumped into the family’s pickup truck and drove 150 miles to pack up her daughter’s belongings and bring her back home.
“At the time,” Dawn Frazier said, “I thought something was wrong, but I didn’t know what it was. I just knew it was like dealing with my grandma,” who had suffered from dementia.
Rhonda gave birth to a son in August 2002; she was unable to care for him. Dawn and Doug Frazier were well into middle age when they became the defacto parents to their grandson, Clay.
The Fraziers finally learned what was going on with their oldest child in 2004 from a gerontologist at the University of Washington Medical School. The diagnosis was devastating; Dawn Frazier recalled it exactly:
The doctor “walked in and said, ‘Yes, it is Alzheimer’s — and she won’t make her 40th birthday.’ And then (the doctor) said, ‘It might not be a good time to talk about it, but we’d like to have her brain for study.'”
The Fraziers were numb for three months. Rhonda Frazier was 31 years old.
“I didn’t know anything about Alzheimer’s,” Dawn Frazier said. “My first thought was, where’s the pill for this? I thought it was an old person’s disease; I didn’t know it was fatal.”
A second opinion, from specialists at Oregon Health & Sciences University in Portland, confirmed the UW gerontologist’s diagnosis.
When it became impossible for the Fraziers to care for their daughter, they moved her into a memory care facility in the Central Oregon city of Madras. Their grandson, an active and cheerful toddler, accompanied his grandparents to visit his mother. The two had a bond that didn’t require words, Dawn Frazier said. Clay lovingly touched his mother’s hands; her nature remained sweet to the end.
“That’s the last thing that went,” Dawn Frazier said. “The last words she could say were, “It’s a sunny day.'”
On Halloween in 2006, Clay, who had turned 4 two months before, again visited his mother. Rhonda Frazier had fallen silent; she seldom moved. Clay took her hand and slowly turned it over. He placed a small pumpkin in her palm. She looked at her son with a gentle, blank expression.
She died less than two months later, on Dec. 8, 2006. She was 34.
Coping with loss
In the years since her daughter’s death, Dawn Frazier has become an advocate for Alzheimer’s awareness, particularly regarding early-onset Alzheimer’s. She and her husband live in Prineville now, but she was back in Eugene in September to visit her mother — and to help publicize the Walk to End Alzheimer’s two-mile loop through Alton Baker Park.
She wants people to know that about 10 percent of the 5 million people who have Alzheimer’s in the United States have early-onset Alzheimer’s, which is defined as affecting people younger than 65. Only a fraction of them are as young as her daughter.
The baffling disease is the sixth-leading cause of death in Oregon, which has the 10th-highest Alzeihmer’s death rate in the nation. More information about the cost and frequency of the disease is available from the Alzheimer’s Association at alz.org/facts.
What’s needed to battle the disease now, Dawn Frazier said, is research and awareness — and money to fund more of both. She thinks money spent searching for a cure is money wisely spent, especially when compared with the exorbitant cost of Alzheimer’s care.
“It’s not just about Rhonda,” she said. “(And) it’s not just about old people. By 2050, it will cost $1.1 trillion just to care for Alzheimer’s patients in the United States; it costs $236 billion in 2016.” It is more expensive than cancer, she said. “You can have cancer and not have to go to a memory care unit.”
And there are the uncalculated costs.
“Unpaid caregivers having to quit jobs and take care of stricken family members,” she said. It tears at family relationships; it fosters fear. One of the few things known about Alzheimer’s is that it runs in families.
“My?…?other kids are saying, ‘Mom, am I next?'”
So far, researchers have no answer to that question.
Information from: The Register-Guard, http://www.registerguard.com