Three years ago, Laurie Waters began forgetting things. At work, tasks that had once taken her five minutes now took 15-30 minutes. She would make her coffee, then forget to drink it.
The worst, Waters says, was when she forgot her oldest granddaughter’s name for a moment. When she asked her coworker for help, they thought she was joking. Waters panicked — she knew something was wrong.
She remembers sitting in her neurologist’s office, which she had attended for 12 years due to migraines. This time, she was waiting for answers.
When her doctor came to deliver the test results, she knew the news was bad. The doctor, who had known her for over a decade, burst into tears.
The diagnosis was early onset Alzheimer’s and dementia. She was 52 at the time.
“We were good friends,” she says. “Because of that, I asked him straight out — how long do I have? You need to tell me.”
She was told she had eight to 10 years before she would lose significant cognitive function.
At first, Waters says, she was devastated. “I thought about suicide,” she says. “I don’t want my husband dealing with this.”
She has two biological daughters, three stepsons and five grandchildren. She thought about the toll her illness would take on them.
But then she decided that if she had eight to 10 years, she would live them to the fullest. Not just for herself, but for others, too.
Today, Waters, 55, of Clover, South Carolina, advocates for herself and helps others in her situation. She works with a peer-to-peer group through the Alzheimer’s Association that talks online every day. (Before the coronavirus pandemic, they often met in person.)
Her goal is to establish a peer group in Rock Hill.
‘I think I’m opening up people’s eyes’
On a brisk Monday morning, sitting on her porch, Waters doesn’t seem different than anyone else. She fixes a cup of coffee and settles into her chair, wearing purple necklaces that match her nails perfectly — she painted them herself, she says.
She’s just like anyone else, Waters says.
Her husband of 17 years, Ricky Waters, says the same — sometimes she repeats questions or forgets things, he says, but she’s the same person he’s always known.
Some things have changed. Waters has retired from work. “I used to read a book a week,” she says. “I can’t remember the last time I read a book.” But she isn’t letting her disease stop her.
“I think I’m opening up people’s eyes,” she says. “Somebody with dementia is not always that little old lady, drooling on herself. They’re in their ‘50s — I’ve met people who are 46. We have a voice, and we need to be heard.”
Waters believes that people who are diagnosed with Alzheimer’s and dementia need to be involved in advocacy work for these diseases. They don’t need a spouse or relative to speak for them, she says.
In the past three years, Waters has gotten involved with multiple advocacy projects for people like her.
She’s passionate about helping others connect with people in situations like hers, she says. For a long time, she felt like no one could relate to her situation.
Then she was invited to meet with a peer group in Greenville. When she walked into a coffee shop to meet the group, her world changed.
“I saw people that look like me, that have Alzheimer’s and are fighting, for the first time ever,” she says. “It changed my life. I thought, ‘Oh my goodness, I can still have a life.’”
Advocating for themselves
Waters wants people to understand that people with Alzheimer’s and dementia can advocate and fight for themselves, she says.
She is one of only two people in the state of South Carolina that are on the Alzheimer’s Association Advisory Group, even though recent data from the Alzheimer’s Association shows that 120,000 people in the state live with Alzheimer’s.
The advisory group is made up of people who are living with Alzheimer’s or dementia themselves. They work to raise awareness about early-stage issues, advocate for funding for research, and provide input to external groups from the perspective of people living with these diseases.
Waters has also been involved in advocating for the Promoting Alzheimer’s Awareness to Prevent Elder Abuse Act, which was signed into law in December, according to Beth Sulkowski, vice president of communications at the Alzheimer’s Association. The Act serves to include people with cognitive disorders in protections against abuse.
Waters has advocated for similar laws to U.S. Rep. Ralph Norman, Sulwoski said.
She won’t stop until she has to, Waters says.
“It’s what keeps me going,” she says. “Maybe if I stop, the disease will take over.”
Ricky Waters says this is the woman he has always known.
“She’s always fought for something,” her husband says. “She’s a fighter. She’s always wanted to help people.”
Another motivator is her grandchildren, Waters says. “I want them to remember that their grandma had spirit,” she says.
And for now, she’ll keep that spirit burning.