When Mary Lou Simmons was younger, she used to accompany her mom, Pat, to piano lessons. Mary Lou, who played the clarinet, would sit on the piano bench next to her mom and watch her play.
“She always loved to play piano,” Mary Lou says. “One day, I realized she wasn’t playing any of the notes that were on the page, though. She was doing it by ear.”
Pat came from a musically gifted family. Her father played guitar in their church band, and her mother had a big upright piano in her house.
As Pat continued to age, her love of music never went away, and she could continually be found listening to gospel music.
“She was the kind of person who always went to church on Sundays and looked fabulous doing it,” Mary Lou says. ”
However, there was always one weekend of the year that her mother skipped church. For years, Mary Lou and her sister, Rita, visited their mom’s house in Rockingham County for the weekend between August 31 and September 2 for their birthdays.
“We always got together and exchanged gifts and had a big breakfast,” Mary Lou says. “We would stay in our pajamas all morning and just relax and spend time together.”
But about 25 years ago on that Sunday, Pat came out dressed for church.
“She had completely forgotten our birthdays,” Mary Lou says. “We knew something was wrong.”
Immediately, Mary Lou says she and Rita decided they needed to take action. Pat’s sister had been diagnosed with Alzheimer’s a few years prior, and they had been aware of the symptoms. So Mary Lou accompanied Pat to her next doctor visit, where she was diagnosed with Alzheimer’s and put on treatment for cognitive symptoms (memory loss, confusion and problems with thinking and reasoning) of Alzheimer’s. (While current medications cannot stop the damage Alzheimer’s causes to brain cells, these types of medications may help lessen or stabilize symptoms for a limited time.)
For years, Pat remained independent. She was living alone and she was still able to perform basic functions to take care of herself with her daughters checking on her often.
“You really want to believe that everything is going to be okay because that’s your mom,” Mary Lou says. “You think, ‘maybe this is just a set back,’ but then you realize it’s not.”
For Mary Lou, the moment of realization came when she was driving home on the 4th of July. She received a phone call from the police that her mom had been out knocking on her neighbors’ doors looking for her own mom who had passed away years before.
“We realized we needed help,” Mary Lou says. So they turned to the Alzheimer’s Association’s online resources, educating themselves about the disease and its stages, as well as tips for transitioning individuals living with dementia into continuing care communities. Mary Lou placed her mom in an adult day center between her and Rita’s homes.
“The Alzheimer’s Association taught me that one of the things that is critical is structure, so I tried to provide that for her,” Mary Lou says. “Every morning at 7:30 I would stand in line at the front of the day care and drop her off before I went to work, and every day I would pick her up at 4:00. No earlier, no later.”
At first, Mary Lou and her sister Rita were sharing the caregiving responsibilities, having her stay overnight at both of their houses. But when Rita passed away, Mary Lou became her mom’s primary caregiver.
Pat lived with Mary Lou for years, and every night Mary Lou would fix her a slice of cake and then hand her a portable keyboard. “I needed to find something that would keep her calm and engaged,” Mary Lou says. “She would just play and play and play. That keyboard saved me.”
She also purchased copies of her mom’s favorite CD: gospel music by Mahalia Jackson.
“The CD would start playing and Mom could sing every word of every song,” Mary Lou says. “She couldn’t remember much of anything but she could remember every word to all of these spirituals.”
Eventually, Mary Lou had to place her mom in a Memory Care facility, and while there, Pat always loved listening to that CD and playing piano.
5 years ago, on July 25th, Pat passed away, and her headstone is engraved with music notes.
“Even when she was at her worst, she loved music,” Mary Lou says. “She needed something to bring her joy.”
After her mom’s passing, Mary Lou was looking for something to do with her time and a way to help other caregivers. So she applied to be a volunteer with the Alzheimer’s Association – Western Carolina Chapter. Initially, she wanted to be an Alzheimer’s Association Community Educator, but then attended a health fair in Thomasville, North Carolina, with Alzheimer’s Association staff.
“While there, I realized that I really enjoyed sharing my story,” Mary Lou says.
So she became an Alzheimer’s Association Community Representative, who represents the Association in the community at outreach events, such as health fairs, third-party fundraising events and other outreach opportunities. Often, she shares her own story while also providing education and information about the Association’s resources to local individuals. Along with attending outreach events, Mary Lou keeps pamphlets of information and business cards for the Association’s 24/7 helpline (800.272.3900) at her job at Wells Fargo.
“For me, the Alzheimer’s Association’s resources were incredibly helpful in understanding what stage my mom was in throughout her journey,” Mary Lou says. “It’s one of those organizations that is always a distant thing in your mind, but you think, ‘that doesn’t really apply to me,’ until one day, it does.”
“I want to educate people about the amazing resources the Chapter provides, but also let them know that as a friend, as a fellow caregiver, and as someone who understands what they are going through, they are not alone,” she continues. “Misery loves company, but if you can provide a little bit of hope, misery can’t be misery for much longer.”
Now, Mary Lou hopes to help other families facing Alzheimer’s disease navigate the journey, and one of the tips she uses that resonates with her most is: “find something that will bring them joy.”
“I always thought Mom was like a kaleidoscope,” Mary Lou says. “It would be like ‘click click,’ and I could see who she was before Alzheimer’s, and then it would be like ‘click’ she’s gone. But most of those clicks happened because of music. Those moments of clarity give you hope, and that’s what I hope to give to other people.”
Like Mary Lou, you too can inspire others and use your gift to help grow the mission of the Alzheimer’s Association from the ground up. To become an Alzheimer’s Association Community Representative and help grow awareness of the Alzheimer’s Association in North Carolina and its resources in your community by attending events and sharing your story, fill out a volunteer interest form or contact Luanne Kirkland (firstname.lastname@example.org) or by phone at 980.498.7723. Learn more about all of our volunteer opportunities at alz.org/northcarolina/volunteer.