Daughter asks who’s “got their ears on” for Alzheimer’s Awareness

“Hey Shirley, this is Squirrely. You got your ears on?” So goes the refrain of a 1970s song.

“A fun memory about my mom, Shirley, is that she loved to talk on the Citizens Band (CB) radio back in the 1970’s,” shares Julie Clarke of Greensboro, N.C. Julie’s parents owned a floor covering business in Fostoria, Ohio. Shirley was always very fun-loving, light-hearted and loved by everyone. So naturally she was the marketing and sales brain behind the business. Their successful sales of floor coverings, in fact, earned them at least four free CBs, jokes Julie. “We had CBs in our house, car, van and gave a couple away.” Julie and Shirley would stay up late at night at the dining room table asking if anyone had “their ears on,” chatting with others in the lingo.  “Mom was always so funny on the CB. From then on she always introduced herself Squirrely Shirley and my handle was Dolly for Dolly Madison cookies, the First Lady of the United States and a version of my maiden name, Madson.” 

In addition to making friends with all of the truckers in the area through her popularity on the CB, Shirley and her husband Kenny, enjoyed entertaining folks in their neighborhood. They, in essence, turned their home into a curtain and floor covering showroom in the purest sense of the word. Julie admits she did not quite understand the concept at the time but always wondered why her parents were constantly changing the colors of the carpet throughout each room in the house, and how she was able to enjoy candy-striped carpet in her own room! Neighbors would come over and the family would gather around the piano. “My sister or my dad would play it, and mom would sing, even though she was tone deaf,” chuckled Julie. “The best part though was that she loved singing and dancing. We’d all join in and be together around the piano.” These regular neighborhood gatherings would not be complete without a little homemade wine — dandelion and peach were among the more popular — compliments of Julie’s dad. He’d use pairs of Shirley’s pantyhose for the straining process, which she was not a big fan of seeing them hanging from the ceiling dripping into buckets, strewn about different parts of the house.  

Sadly, Kenny passed away at the age of 51 from a massive coronary, when Julie was just 16.  Not only had he smoked for most of his life, but many believe inhaling toxic chemicals using epoxy glaze and paint chips to produce many beautiful seamless hard floors for customers also contributed to his illness. Two years later Shirley remarried and moved to Michigan and then Florida. Shirley then lost her second husband as well, and grief ruled her life’s decisions for many years following, much stemmed from substance abuse. She eventually returned to Ohio after years of beckoning from her family. Unfortunately though, timing would take both Shirley’s son to Boston and Julie and her first husband to Hungary, leaving Shirley alone once again.

Julie returned to Ohio to discover her mother’s drinking had escalated during her absence. Neighbors shared with Julie how much her mom was drinking as well as how erratic her behavior had become. Julie, who had two daughters of her own now, could not trust her mother with the girls. Julie’s family organized an intervention for her mom, but Shirley was strong willed and adamant that she did not have a problem.

Julie became her mother’s primary caregiver since she lived closest. On top of her on-going substance abuse, Shirley experienced an adverse reaction to a medication during a routine colonoscopy and was diagnosed with Wernicke-Korsakoff syndrome. They believe Shirley also experienced several mini strokes. “I went to see Mom in the hospital, and they had her tied down in the bed. She did not know what day of the week it was and did not know who the president was,” adds Julie. “So they put her in rehab for ten days and she never drank again.”

A milestone short lived, as soon thereafter Shirley developed back problems which required additional surgery. It was at this same time where they believe she suffered another mini-stroke while under the anesthesia, and her condition was diagnosed as what they referred to as progressive dementia.

While the drinking may have subsided, the hallucinations worsened. Shirley would call Julie at two in the morning believing that there were monsters under her bed. She would put a glass dish on the hot stove, wondering why it shattered. Julie brought her girls by to see Shirley at her apartment and noticed that Shirley’s car had been sideswiped. Shirley proceeded to give Julie at least two completely different stories on what happened to the car, ultimately having her car keys taken away. Julie and her siblings did their best to manage the care of Shirley, but her condition deteriorated (not knowing where she was, leaving the house and wandering the streets) such that they made the decision to transition Shirley to a memory care community in 2004. Upon arrival, it was the care facility’s policy that the guest needed two weeks without family visits or phone calls during the adjustment period. Julie’s family was guilt ridden but believed they were making the best decision given the circumstances. The first time they called to check on Shirley, they were given a report that she was carrying one shoe and a toothbrush in her purse and walking the halls. Shirley asked to leave the facility numerous times, but everyone realized that wasn’t a viable option. Within one week, Shirley passed away. Julie admits her family was shocked at their mom’s sudden passing and initially blamed themselves over breaking her heart. Ultimately, Shirley had a stroke that caused her passing. The doctors assured the family that it could have happened anywhere. Nonetheless, it took some time for them to overcome it.  

Last year’s Walk to End Alzheimer’s flashed on Julie’s radar last year when her brother participated in a Walk in Rhode Island. “I donated to him on Facebook last year, and that’s how I got the link to learn more about it.” She had been living in Florida for the past few years and recently relocated to the Greensboro area during the pandemic. In an effort to get acquainted with and give back to the community, Julie had been volunteering with Meals On Wheels for the past several months. She found information on Walk to End Alzheimer’s – Guilford County that is taking place on October 15 at LeBauer Park and wanted to get her family who lives in the area involved. Thus, their Walk Team, Squirrely Shirley was born. They are eagerly working on their fundraising efforts as they believe it’s critically important to find a cure. They have already raised nearly $600 of their S2,000 goal.

So much advancement has been made in better understanding Alzheimer’s disease since Shirley’s passing. “Back then, the doctors would not say that mom had Alzheimer’s,” shares Julie. “They called it progressive dementia and believed her condition was exacerbated by her drinking and strokes experienced during her medical procedures. They did not do an autopsy on her and that was the only way Alzheimer’s could be confirmed then.” Julie admits that she was not that familiar with the Alzheimer’s Association when her mother was living with dementia. Whereas Shirley passed away in her 70s, Shirley’s sister, Betty, was later diagnosed with the disease and lived into her 80’s. Julie observed that her aunt led a healthier lifestyle and took better care of herself. Research is still evolving, but evidence is strong that people can reduce their risk of cognitive decline by making key lifestyle changes, including participating in regular physical activity, staying socially engaged, and maintaining good heart health.

Julie’s inspiration to participate in Walk to End Alzheimer’s this year stems from the fact that she does not want her grandchildren to endure the challenges that she and her siblings faced in caring for Shirley. “Alzheimer’s awareness is so important for the public to understand,” adds Julie. “My goal is to add at least ten more people to our Walk team, and I look forward to sharing my story in this journey through social media fundraising and face to face.”  

Team Squirrely Shirley is indeed looking forward to its first Walk in a few weeks and all the special moments it will encompass. Three generations of the family honoring their singing, dancing, hostess-with-the-mostess mother, grandmother and great grandmother who always lived life to the fullest — with her ears on!

LIKE JULIE, WE ALL HAVE A REASON TO FIGHT FOR A WORLD WITHOUT ALZHEIMER’S DISEASE. Join your local Walk to End Alzheimer’s today as an individual, team, or sponsor.

The Alzheimer’s Association hosts 17 walks across North Carolina. The Alzheimer’s Association Walk to End Alzheimer’s is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. Since 1989, the Alzheimer’s Association® mobilized millions of Americans in the Alzheimer’s Association Memory Walk®; now the Alzheimer’s Association is continuing to lead the way with Walk to End Alzheimer’s. Together, we can end Alzheimer’s. Your health and safety are our top priorities. We will continue to closely monitor CDC, state and local guidelines to ensure Walk events adhere to the latest recommendations.

Alamance County9/24/2022
Guilford County10/15/2022
Henderson County9/24/2022
Iredell County9/24/22
Moore County10/1/2022
Mount Airy09/10/2022
New Bern10/22/2022
Unifour (formerly Hickory)10/29/2022
Triangle (Raleigh-Durham)10/15/22

Alzheimer’s isn’t stopping and neither are we.

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