Lucia Langdon had always forgotten names. She always told stories with a little hyperbole thrown in. As years passed, she gradually grew more and more forgetful, but her six children thought her decline was normal aging.
Suddenly, it seemed, the subtle changes in their mother piled up to be problematic. Lucia was no longer just forgetful, but also nervous when driving.
Her children moved her from a house to an apartment and sold her car. They did more and more for her, taking her shopping and bringing her food.
Lucia couldn’t operate a microwave. She’d light the wrong end of a cigarette. The woman who kept an immaculate house forgot she needed to clean her apartment.
“The personality change (for her) to not clean was amazing,” said her daughter Carol Marquart, Washington, now 55.
Lucia developed a skin issue on her face, likely from bugs in her apartment, and a doctor prescribed a week-long course of steroids and antibiotics. She was supposed to take one of each pill per day, but she forgot the instructions and took the medicine when she thought she needed it.
Lucia, then 80, took seven days’ worth of steroids in three days, and was hospitalized.
The doctor observing Lucia in the hospital told her children that she could not live alone anymore. He would only discharge her if she went to an assisted living facility.
He confirmed what Carol and her brother Murray Langdon, now 60, had feared. Lucia was not aging normally. She had Alzheimer’s disease.
Alzheimer’s disease is the most common form of dementia, affecting one in nine Americans over age 65 according to the Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures.
The disease causes problems with memory, thinking and behavior as nerve cells in the brain malfunction and die. The progressive brain damage from Alzheimer’s eventually impairs the ability to carry out basic bodily functions, and the disease is ultimately fatal.
After Lucia’s diagnosis, Murray, Carol and Carol’s husband Greg learned all they could about Alzheimer’s. They went to educational programs at local assisted living facilities and discovered the Alzheimer’s Association website, www.alz.org.
Online, they read about the symptoms and stages of the disease. Whenever Murray sent an email to his siblings about their mother, he included a link to the Alzheimer’s Association website and encouraged them to visit it.
“It was the one we trusted and leaned on,” he says.
At one doctor presentation about Alzheimer’s that Carol and Greg attended together, the doctor said the disease usually lasts about 10 years. Carol turned to ask Greg, “Well, then what happens?”
“Then they die,” Greg told her.
Carol was shocked. She, like many, did not realize death is the outcome of Alzheimer’s disease.
Through her volunteer work with the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research, Carol has made it her mission to increase awareness about the disease as well as raise money to find a cure.
Carol’s efforts center around the Walk to End Alzheimer’s, the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research.
The annual walk unites a community in a display of combined strength and dedication to fight against the devastating disease and reclaim the future for millions.
In 2011, Carol and her sister Janice Westhoff formed a family team, “Total Recall,” for the Walk to End Alzheimer’s in Washington.
Carol joined the Parker Hannifin-Sporlan Division corporate walk team last year. The team raised $7,614 through various fund-raisers, including their signature luncheons for donations.
This year, Carol will join both Parker Hannifin-Sporlan Division and her family on “Total Recall” at the Walk to End Alzheimer’s in Washington on Sept. 7.
“Carol’s dedication and the support of the Parker Hannifin-Sporlan Division team is incredibly inspiring,” says Megan Herman, outreach coordinator for the Alzheimer’s Association.
“With the funds raised, the Alzheimer’s Association will be able to provide much needed support to local families affected by the disease as well as fund critically needed Alzheimer’s research.”
Carol makes sure her coworkers know what their money is going toward when they donate. At the end of every fund-raiser at Parker, Carol announces how much money was raised. She thanks her coworkers for their generosity in donating to end Alzheimer’s, because it’s the sixth leading cause of death and there is no cure.
She displays an advertisement for the walk on her desk and isn’t afraid to talk about the disease when others are.
Finding a cure would be great, Carol says, but before that can happen, “we need to get funding and bring awareness that the disease kills.”
Unlike other charity walks, no one at the Walk to End Alzheimer’s is a survivor, Carol points out.
“I wish they’d find a cure, but in the meantime, we need to educate caretakers so they can cope better and take better care of their loved one,” Carol says.
She wishes she’d known more about Alzheimer’s when Lucia began to decline, knew not to ask questions and test Lucia’s memory, aggravating them both. Once Carol learned about the disease, she knew how to interact with Lucia and felt more comfortable around her.
Over time, Lucia’s hyperbolic stories became her reality, Carol says.
Lucia was always upset with one of her six children for something she believed they did, from shooting a gun to stealing her papers. Murray usually went along with her stories, telling Lucia he’d take care of whatever was wrong. The only time it bothered Murray was when Lucia insisted his brother Jeffrey had driven a car into her room at 2:30 a.m. Jeffrey was in the hospital with a morphine drip, dying from bladder cancer.
Murray kept his anger inside. He knew that Lucia couldn’t help it, that the disease had already taken her away. “We lost our mom as we knew her 4 1/2 years before she died,” he says.
As Alzheimer’s progresses, individuals with the disease need more and more help with daily activities. They have difficulty moving, which can lead to fatal health complications such as pneumonia. Lucia fell several times, breaking her hip. She developed more health problems. Last year, at the age of 84, she died.
The vision of the Alzheimer’s Association, a world without Alzheimer’s disease, would be a dream come true for Murray and Carol. One in three seniors dies with Alzheimer’s or another dementia; it’s statistically probable that at least one of the five remaining siblings will develop the disease.
Carol and Murray worry constantly.
But they don’t just worry. They walk, pushing for more knowledge and awareness about the disease that claimed their mother. They hope for a cure for Alzheimer’s.
Murray asks, “Wouldn’t it be great if our children didn’t have to deal with it?”
For additional information or support, or if you would like to donate to “Total Recall” or the Parker Hannifin-Sporlan Division team, visit www.alz.org/stl or call 1-800-272-3900.
Ellie Kincaid is a 2010 graduate of St. Francis Borgia Regional High School.