When Arthena Caston wakes up in the morning and doesn’t have to ask Amazon’s Alexa what day it is, she knows it’s going to be a good day. Little details that used to come naturally now slip her mind, and it’s not just morning grogginess. Caston’s memory is gradually slipping away, like grains of sand between her fingers.
The 54-year-old Macon resident was diagnosed with Alzheimer’s about three years ago, and she’s still learning to accept that she doesn’t know what each new day will bring.
“It’s a transition that I have to realize is happening,” Caston said. “It’s just going to happen.”
Alzheimer’s is the most common form of dementia, accounting for between 60 and 80 percent of cases, according to the Alzheimer’s Association. It’s the sixth-leading cause of death in the U.S., as well as in Georgia, and the number of Alzheimer’s-related deaths in the state has increased by 201 percent since 2000.
Researchers estimate 140,000 Georgia residents are living with the disease, and that number is expected to rise to 190,000 by 2025.
“The numbers, we know, are probably actually low, because a lot of folks end up not getting a diagnosis ‘til they are mid-stage or later-stage,” said Marylea Boatwright Quinn, advocacy and public policy manager for the Georgia chapter of the Alzheimer’s Association. “So we suspect that number is even higher.”
Alzheimer’s, which leads to loss of memory and other cognitive functions, is often thought of as an aging-related condition. However, about 200,000 of the 5.7 million Americans living with the disease received a diagnosis before the age of 65. Such cases are referred to as early-onset or younger-onset Alzheimer’s and can stop lives in their tracks long before old age.
Caston was at the height of her 18-year career when she found out she had Alzheimer’s. But two weeks after her diagnosis, she went into work one day and decided she needed to make a change.
“I just couldn’t do it anymore,” said Caston, who was a customer service representative at Geico. “It was at that stage, because it was so new, that it was at the point where I was crying all the time, because every time I would think about it, and think about what I think about when I think about Alzheimer’s — the losing the independence, all the negative about Alzheimer’s — I just, I just could not do it.”
At 51 years old, in otherwise good health, Caston saw no other option but to retire. Her life as she knew it was over.
‘A whole new world’
Caston first thought something was wrong when she started to have trouble picking up new concepts on the job. Working at an insurance company, Caston had to keep track of a multitude of state and federal rules and regulations, and she could no longer catch on like she used to.
“It’s a very fast-paced environment that there’s a lot of information going through all the time,” Caston said. “And I got to the point where it was getting harder and harder for me to understand.”
She finally decided to bring it up with her doctor, and he told her that it was probably just stress. But then she left her car running at work one day, the battery completely drained when she got in to leave, and she knew she needed another answer.
“I said to myself right then, ‘Something is really not right,’ ” Caston said.
Memories that had once been so familiar to her, like the route she always took to the grocery store or recipes she’d cooked for years, had grown foreign. It was like forgetting to put tomatoes in spaghetti, she said. So Caston brought it up with her physician again, setting in motion a months-long process to get a diagnosis.
Caston met with a series of neurologists, physicians and neuropsychiatrists before finally, at 2:30 p.m. on March 23, 2016, Caston got the news she had been dreading all along.
“I can remember that day like it was yesterday,” she said.
Caston’s neurologist called her and her husband into his office and unloaded a heap of medical jargon. Caston sat there, silent, staring at a giant cuckoo clock on the wall. She felt numb. Then came the three words that changed her life: early-onset dementia.
The doctor asked if Caston had any questions, trying, without success, to coax some sort of reaction out of her. But she didn’t say anything. Instead, her husband chimed in and asked, “What does this mean?”
Caston would take medication to slow the progress of the disease, but, without a cure, not much else could be done.
“They gave me the medication and said, ‘If you have any questions, there’s anything we can help you with, let us know. We’re sorry this has happened,’ ” Caston said. “That was that day. I just kind of came home, and that was the beginning of a whole new world.”
Now, Caston takes life day by day. She wakes up every morning at about 8 and watches reruns of “Leave It To Beaver” and “Perry Mason.” After that, her schedule is wide open. Some days, she gets in the car and drives to Hobby Lobby to buy crafting supplies. Other days, she cleans around the house or talks to friends on the phone.
On Tuesdays, Caston’s husband takes out the laundry basket before work to remind her that it’s “wash clothes day.” Otherwise, she said, she’s a “free bird.”
“Whatever I get up to do that day, and I want to do, that’s what I do,” Caston said, adding, “I don’t have a typical day. And that’s fine. Sometimes I wish I did, but it’s fine.”
Caston gets lonely sometimes, sitting at home, waiting for her phone to ring. But she said her family gets her through, especially her husband, Virous Caston. She said she knows her diagnosis is always on his mind, but Virous, who served in the Marines for nearly two decades, never says it’s something he can’t cope with.
“He’s the strongest Marine I know. He is one that is going to be with me until the end,” she said. “You know, he has even told me, you know, ‘God put me on this earth, baby, to take care of you.’ So he is definitely my rock.”
Things will change in a few weeks when Caston’s youngest daughter, 25-year-old Brianna, leaves for basic training with the Air Force.
“That’ll be a new transition of life for us, for me, to not have her in the house all day to talk to me,” she said.
Caston’s 29-year-old daughter, Brittani, also served in the Air Force and now lives with her husband and 1-year-old son in California. After Brianna goes to training, Caston plans to visit. It’ll be something to look forward to.
An uncertain future
Thinking about the future is hard for Caston. She watched her own father die from Alzheimer’s-related complications, and she remembers how difficult it was to see him get sicker and sicker.
Caston doesn’t want to lose her independence. She doesn’t want to lose her identity.
“I’m actually not going to know who I am in a couple years,” Caston said. “That is the scariest thing there is.”
There are so many things she was looking forward to — like watching her grandson grow up — that are now uncertain.
“Those are the things that sadden me. I looked so forward to when me and my husband were going to retire together and do things together, travel, and those things, I don’t think will happen,” she said, tears welling in her eyes. “But you never know.”
For now, Caston is trying to stay positive. She hopes to join a clinical trial for a new drug that might target the progression of the illness. She know it’s not a cure, but it could at least keep things as they are.
“If it stops right here, where it is now, I could live like this right now,” she said.
In the meantime, she’s committed to sharing her story with anyone who will listen. “I would tell my story a million times if I had to,” she said, “if it’s going to help just one person.”
Last fall, Caston spoke at the Alzheimer’s Association of Central Georgia’s annual Walk to End Alzheimer’s. The Alzheimer’s Association, which advocates on behalf of Alzheimer’s research and provides resources for individuals and caregivers touched by the disease, has helped Caston endure her worst days. She’s developed close relationships with staff members, like Mott Smith, director of programs and services.
“They’re the group that, when I’m having that, ‘This is a rough day, today,’ type thing, I can come and say, ‘Mott, I’m having a bad day,’ ” she said.
But when Caston visited the office on a sunny Friday in September, World Alzheimer’s Month, she was feeling upbeat. She’d gotten her hair done that morning and wore a white lanyard around her neck, adorned with purple pins, the official color of Alzheimer’s awareness.
“It’s a great day, ‘cause I got up this morning, and I knew what my name was, and I knew it was Friday,” Caston said, breaking into a laugh. “And I didn’t have to ask Alexa. So, she didn’t have to tell me, ‘Today is Friday.’ ”
If you or someone you know has or is showing signs of dementia, you can call the Alzheimer’s Association’s 24-hour hotline at 800-272-3900 or visit the Alzheimer’s Association of Middle Georgia Regional Office at 886 Mulberry Street in Macon.
Samantha Max is a Report for America corps member and reports for The Telegraph with support from the News/CoLab at Arizona State University. Follow her on Facebook at facebook.com/samantha.max.9 and on Twitter @samanthaellimax. Learn more about Report for America at www.reportforamerica.org.