08/02/2013 - It didn't start with the car accident, but that's when Fenton resident Cindy Jung, now 47, and her siblings realized something was wrong with their mom.
Cindy Jung, center, and her children, Nick and Jennifer Jung. (click for larger version)
Ginny Ewen, then 71, was driving her daughter and granddaughter home one night when she made a left turn on red. An oncoming car slammed into the side of Ewen's car. Her car was totaled and she never drove again.
Ewen didn't want to acknowledge anything was wrong, but with the car accident, she and her children had to face the truth.
She was diagnosed with Alzheimer's disease, a type of dementia that 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 an individual's ability to carry out basic bodily functions, and the disease is ultimately fatal.
Alzheimer's is the most common type of dementia and the sixth leading cause of death in the United States, according to the Alzheimer's Association's 2013 Facts and Figures. The doctors told them the average Alzheimer's patient lives for 10 years. Jung and her siblings were devastated. Ewen was mad.
"I'm going to have what grandpa had?" she asked.
Ewen had taken care of her father-in-law, who had Alzheimer's disease in the 1980s. The family remembered how he changed as the disease progressed. They had to turn off their gas stove so he couldn't accidentally hurt himself or burn down the house. They fixed the door handles in the house so he couldn't turn them and leave by himself. He'd have delusions and think he was back on the farm where he grew up, lining up chairs like they were cattle. His personality changed, and he grew violent. Despite the times he was difficult to handle, Ewen took care of him.
"Mom was something else," Jung said. "Mom and Dad instilled in us that family was more important than anything else."
Even if you learn from history, sometimes you have to repeat it anyway. This time around, Jung and her siblings are taking care of their mother.
Ewen, now 81, cannot be alone. She lives with Jung and her two children, but all of Ewen's children participate in providing care. On Wednesdays, Jung works from home. Her sister, Cheryl Adank, works part-time in order to care for Ewen two days a week. The rest of the days they take Ewen to an adult day care or an in-home caregiver stays with her, and other family members take turns caring for her on the weekends.
Walk to End Alzheimer's
Soon after the diagnosis, Jung and her family found the Alzheimer's Association, the world's leading voluntary health organization in Alzheimer's care, support and research. They received training about what Alzheimer's is and had family consultations to talk about their situation and the problems they face. Jung calls the 24/7 Helpline when she needs advice, and wants others to know that no one has to deal with the disease alone and that help is available.
Six years ago, Jung volunteered at the Walk to End Alzheimer's. Since then, she's visited Jefferson City to advocate for Alzheimer's funding and has signed up for a research study.
For the past four years, she has organized a team of family, friends and co-workers to walk and volunteer at the Walk. She raises money. She posts flyers at local restaurants and distributes information about the walk. On Aug. 31, she will be at Busch Stadium for the St. Louis Walk to End Alzheimer's with her team, "Purple Pride."
Everyone in Jung's family gets involved to honor Ewen. The little kids are part of the thank-you brigade at the finish line, and Jung's daughter's soccer teammates volunteer, too.
For Jung, the Walk to End Alzheimer's brings together a community of people in a display of solidarity, strength and dedication to fight against a devastating disease. The community of people affected by Alzheimer's is large, and the disease's cost is high. Ewen is one of the more than five million Americans who live with Alzheimer's disease. Jung and her siblings are some of the 15.4 million caregivers who provided over 17.5 billion hours of unpaid care valued at $216 billion in 2012.
Though Ewen can still do daily things -- dress herself, brush her teeth, tidy up the house -- the change Alzheimer's disease has wrought in her is undeniable.
Alzheimer's disease has taken away Ewen's short-term memory, leaving her with childhood memories but weak ties to the present moment. She says she wants to go home, remembering her childhood home, and will try to walk to a place that no longer exists. She remembers and talks about her parents as if they are still alive.
Still, some things haven't changed. Ewen helps clean the house and plays with her grandchildren and great-grandchildren.
"She's a loving person and still part of this family, separate from the disease," Jung says.
Jung remembers how Ewen treated her father-in-law and wants to set the same kind of example for the younger generations of her family, but hopes history won't repeat again.
"It would be great if there's something to stop or slow this before it's my kids taking care of me," she said. "The disease is a horrible disease, but you have to slow down and take time with the person you love."
The 2013 St. Louis Walk to End Alzheimer's will be held Saturday, Aug. 31, at Busch Stadium, 700 Clark Ave. Registration is at 8 a.m., with the walk at 9 a.m. For additional information or support, or to donate to Jung's team, "Purple Pride," visit www.alz.org/stl or call 800-272-3900.
Editor's note: Author Ellie Kincaid is an intern with the Alzheimer's Association's St. Louis chapter.