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Community Corner

Walking With "Purple Pride"

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. 

Ginny Ewen, then 71, was driving her daughter Cindy and granddaughter home one night when she made a left turn on red.  A car was coming straight and slammed into the side of the car, spinning it around.  A passenger in the other car sustained bad injuries to her leg and ankle, and everyone went to the emergency room by ambulance.  Ginny’s car was totaled, and she never drove again. 

A quiet, sensitive person, Ginny didn’t want to acknowledge anything was wrong.  But with the car accident, she and her children had to face the truth. 

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Ginny 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.  Alzheimer’s is the only cause of death in the top ten with no way to prevent, cure or even slow its progression.

When Cindy and her siblings found out about Ginny’s diagnosis, they were devastated.  The doctors told them the average Alzheimer’s patient lives for ten years. 

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Ginny was mad.  “I’m going to have what grandpa had?” she asked. 

Ginny had taken care of her father-in-law who had Alzheimer’s disease in the ‘80s.  The family remembered how he changed as the disease progressed.  They had to turn off their gas stove so their grandfather 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, Ginny took care of him. 

 “She was way ahead of her time,” said Cindy, reflecting on her mother’s caregiving.  Ginny would redirect her father-in-law when he got upset instead of fighting him.  When he wanted to leave, she’d let him walk out of the house and down the street, but followed him and brought him home when he got tired. 

“Mom was something else,” Cindy 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, Cindy and her siblings are taking care of their mother. 

Ginny, now 81, cannot be alone.  She lives with Cindy and her two children, but all of Ginny’s children participate in providing care.  On Wednesdays, Cindy works from home.  Her sister Cheryl Adank works part time in order to care for Ginny two days a week.  The rest of the days they take Ginny to an adult day care or an in-home caregiver stays with her, and other family members take turns caring for Ginny on the weekends. 

Soon after the diagnosis, Cindy 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.  Cindy calls the 24/7 Helpline when she needs advice about caring for Ginny and to find out about resources. 

Cindy wants others to know what she’s learned through the Alzheimer’s Association, that no one has to be alone dealing with the disease and help is available.  Six years ago, Cindy volunteered at the Walk to End Alzheimer’s.  Since then, she’s visited Jefferson City to advocate for Alzheimer’s funding and signed up for a research study.  For the past four years, Cindy has organized a team of family, friends and co-workers to walk and volunteer at the Walk.  She’s served on the St. Louis Walk committee for the past three years.  She raises money.  She posts flyers at local restaurants and distributes information about the Walk to End Alzheimer’s at other charity walks.  On August 31, she will be at Busch Stadium for the St. Louis Walk to End Alzheimer’s with her team, “Purple Pride.” 

Everyone in Cindy’s family gets involved to honor Ginny.  The little kids are part of the thank-you brigade at the finish line, and Cindy’s daughter’s teammates on the Maryville soccer team volunteer, too. 

For Cindy, 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.  Ginny is one of the more than five million Americans who live with Alzheimer’s disease.   Cindy 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 Ginny 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. 

Incredibly health conscious as an adult, she never allowed candy or sweet things in her house.  Now, she’s forgotten those habits and craves sweets constantly. 

Alzheimer's disease has taken away Ginny'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 and 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.  Ginny 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,” Cindy says. 

Cindy remembers how Ginny treated her father-in-law, gently, caring for him at home.  Cindy wants to set the same kind of example for the younger generations of her family, wants them to see how to love and take care of each other.  But she 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.”  

Cindy often thinks about how she would feel if she were Ginny.  What is it like for someone to always be watching you and telling you what to do?  What is it like when someone tries to do the things you always did for yourself?  Cindy tries to give Ginny her space as much as possible, to treat her like an adult.  Cindy has learned to take one day at a time.  “The disease is a horrible disease, but you have to slow down and take time with the person you love.”

For additional information or support, or to donate to Cindy’s team “Purple Pride,” visit www.alz.org/stl or call 800.272.3900.

 

2013 St. Louis Walk to End Alzheimer’s

Saturday, August 31, 2013

Busch Stadium

700 Clark Avenue

St. Louis, MO  63102

Registration:  8 a.m. | Walk: 9 a.m. 

Register:  1.800.272.3900 | www.alz.org/stl

Written by Alzheimer's Association St. Louis Chapter Communications Intern Ellie Kincaid.  

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