“Spitfire” is one word that Lolita Tripp of Angier, North Carolina uses to describe her mother, Patricia (Pat) Demmel. It only takes a moment to realize that “like mother, like daughter.” A shared trait that, no doubt, serves Lolita well as a volleyball coach. On meeting, Lolita, you immediately notice her purple hair and smiling eyes. Her face lights up as she talks about her mother. She describes her mother as a person who “was willing to do whatever it took to get a laugh out of people.” This energy and upbeat attitude, this eagerness to laugh and experience humor are apparent in Lolita’s personality as well. It was, in part, her mother’s sense of humor that Lolita missed as she walked with her mother and her family through Pat’s and their family’s dementia journey.
Lolita laughs remembering the time she watched her mother, costumed head to toe in an “I Dream of Jeannie” outfit for a performance in her church for a fundraising event. Lolita shares that Pat “wasn’t a large woman by any means, but she wasn’t really in shape, and… I just thought I cannot believe you’re standing up there in front of everybody at church and the Fellowship Hall, and this is what you’re wearing. But it was just what she enjoyed doing.”
Lolita explains that Pat would “make fun of herself. It didn’t bother her. She just wanted a level of comfortability for everybody, and she did that through humor.” She had a certified therapy dog, an Eskimo Spitz named Bailey, that she took to the hospital to cheer up and support the patients there. Pat had, a puppet ministry where she took Arvie the Aardvark puppet to local elementary schools to help children deal with grief. Lolita’s mom was determined to make a difference in other people’s lives and sure to bring a laugh or a comforting smile to them. When she wasn’t helping others, Pat and her husband enjoyed travelling, going overseas multiple times. Their home base for most of their lives was Wake County.
Lolita’s family was pretty healthy, so she did not immediately recognize her mother’s decline. But very gradually, Lolita could not ignore the changes in her mother. Pat became forgetful, not picking up her granddaughter, Larah, or grandson, Trey, from school or an afterschool practice or game. She would not remember a conversation with Lolita that they’d had just the day before. Initially, Lolita chalked it up to being busy, how “your mind goes 100 miles a minute because we’ve got so much going on. And so, I really thought that was it.”
But one incident had a huge impact on Lolita. Her mother “forgot my birthday one year, and that was really before we knew. That was very traumatic for me…I just didn’t know.” Lolita describes how her mother became more and more isolated and reclusive. Lolita watched as her stepfather waited on her mother “hand and foot,” running errands for Pat to compensate for the changes.
When it was clear that Pat’s behavior wasn’t just “forgetfulness or busy-ness,” the family got the neurologist’s diagnosis of dementia and Alzheimer’s. For Lolita and her family, it was the beginning of an eight-year journey along with her mother and her children’s Grammy.
Coming from a family of people who focused on helping others, Lolita was hesitant to lean on the Alzheimer’s Association’s resources. “I really didn’t utilize the Association like I should have, and that’s probably a biggest regret for me. Because, you know, you think other people have it so much worse and you don’t want to use those resources if other people need them more than you.”
But about a year into dealing with the diagnosis and changes that dementia caused in her mother, Lolita connected with the Alzheimer’s Association. She attended a local workshop one Saturday about coping with dementia. Lolita learned about what to expect, what to look for, the things to say and not to say or how to “speak Alzheimer’s,” how to manage financial considerations and concerns, and other helpful information. Lolita felt better able to talk with her children about how to manage their interactions with their Grammy.
Lolita encouraged her children to try new and different things to help their Grammy. “It gave me some concrete things to share with the kids so that they could be a part of her life when she was early on in her in her disease, and that was helpful.” Lolita’s son, Trey, found a way to stay connected with his Grammy by playing one of her favorite songs, “Love Me Tender,” on the guitar.
Perhaps, most importantly in that Alzheimer’s Association workshop, Lolita learned to differentiate “the disease” from “the person.” It wasn’t always easy. She recalled this lesson when she had to be tough and resilient in helping care for her mother. Her stepfather was Pat’s primary caregiver, and he relied on Lolita to “be the bad guy.” Lolita would take the lead at those times, making her mother do things she didn’t want to do, like taking a shower. When Pat was angry or frantic and said mean things, Lolita reminded herself to separate the disease from her mother. Her self-talk or mantra became, “That’s a disease, that is not my mother. That’s a disease, that is not my mother.” Through the seven or so years past that fortuitous Saturday Alzheimer’s workshop, Lolita recalled and practiced the lessons and advice she heard that day.
Pat died in April 2020, just a month into the COVID lockdown. Lolita recalled that her mother slept almost all the time, but with the end near Lolita and her kids went for a visit. Lolita describes how her mother opened her eyes for just a few seconds and made eye contact with Lolita. Lolita knew, without a doubt, that in that moment her mother knew her. A special goodbye as Pat passed away two days later.
To honor her mother and to help others through their dementia journeys, Lolita decided to combine her passion for volleyball and the school where she coaches in Harnett County, Cape Fear Christian Academy, with a fundraising drive for the Alzheimer’s Association. She chose do so specifically through the Association’s The Longest Day campaign, where participants fight the darkness of Alzheimer’s and all other dementia through a fundraising activity of their choice on a day that works for them. Lolita’s private school already conducted events for breast cancer research, called the pink games, so Lolita modeled her event on that idea, creating the purple game with her volleyball team, to make her event to support the fight to end Alzheimer’s.
Her small private school has grades Pre-K through twelfth grade. Lolita coaches the JV and Varsity teams, and works closely with the middle school students so she knew her reach would be school-wide. To start her process, Lolita spoke with her daughter, Larah, who played for her varsity volleyball team and to the team captain to get their ok with her vision. They signed on enthusiastically. This event would be an all-purple event with the commonly used Alzheimer’s icon, a purple elephant, which draws from the phrase “An elephant never forgets,” and she called it The Purple Elephant Game.
With a goal to raise $2,000, Lolita focused on all the details around putting on a Friday night volleyball game. But she created other fund-raising opportunities associated with the game. Her daughter incorporated the elephant symbol in a t-shirt design with elephant balancing a volleyball on his trunk. It seemed like almost everyone in the school ordered a t-shirt, from the smallest sizes to the largest, and there was a good profit put toward the $2,000 goal. There was a summer volleyball camp, a bake sale, purple wrist elastic bands, and a raffle. All successfully contributed to the almost $3,000 raised. But what really took the effort over the top was Lolita’s remarks before their first game in September of 2023, explaining why everything was purple and the impact of Alzheimer’s on her family and on others. The opposing team’s coach was so moved that he approached Lolita after her remarks, and told her that he had lost family members to Alzheimer’s. He donated on the spot.
But Lolita is quick to say that “…it was so much more than money. It really was like lots of people that we don’t even realize are touched by this, and for some reason we don’t really talk about it.” Lolita gets people talking about Alzheimer’s and dementia and the urgent need to find a cure and/or a way to slow down the disease’s progression. And she’ll continue to talk about her mother and ending Alzheimer’s with another Purple Elephant Game in 2024.
While her mother is her inspiration, Lolita is honest to admit that she does this work because “I am scared…I think it’s okay to be scared…or worried… about our own destiny or fate, or whatever’s coming down the road.” Lolita’s message is to talk about our fears, to tell the stories of our loved ones, to share our struggles, and to find a way to raise money for critical research to slow down the disease’s progression and end Alzheimer’s. Her vibrant purple hair and great smile remind us to laugh and smile along the way, just as her mother always did.
LIKE LOLITA, WE ALL HAVE A REASON TO WANT TO OUTSHINE THE DARKNESS OF ALZHEIMER’S. Start planning your own The Longest Day Fundraiser today.
The Longest Day® is the day with the most light — the summer solstice. The Longest Day participants fight the darkness of Alzheimer’s and all other dementia through a fundraising activity of their choice on any day of the year that works for them. With sports tournaments, card games, parties, baking and more, participants raise funds to advance the care, support and research efforts of the Alzheimer’s Association®. Join the fun today!
AUTHOR:
Susan B. Hansell
Susan is a retired nonprofit executive whose work with the Alzheimer’s Association is in honor and memory of her Mother, Beryl. The Association was there for Susan with support and encouragement through her mother’s dementia journey.
Alzheimer's Association North Carolina Blog 