Have you ever experienced a difficult situation and then asked yourself, “Now what am I going to do?” That’s the very first thought that West End, N.C. resident, Katie Carpenter, experienced after learning of the diagnosis of Alzheimer’s disease for her mother, Linda Carpenter. Receiving a diagnosis such as this is never easy. In fact, it’s life changing. Katie remembers feeling a myriad of emotions during this time. She was devastated at how her parents’ lives would change, and she feared the future. She wondered if she would be able to find the strength and wellspring of unconditional love within herself to be the daughter her mom would need.
By the time Katie began to accept this new and painful “normal”, her parents’ home caught fire. Her dad, who was Linda’s primary caregiver, passed away within days of this tragedy. She once again found herself asking, “Now what am I going to do?”
Sadly, the Carpenter siblings had no choice but to place their mother in a memory care community. For Katie, it was daunting to watch her mom’s memory fade and her disease progress. The responsibility of Linda’s care became much more daunting. One prominent part of the journey for Katie was the shift from daughter to caregiver. Wracked with guilt and worry, Katie struggled to find balance and acceptance of this role reversal. This realization was overwhelming at times. Many days she found herself looking to the future — anticipating how her mom’s condition would worsen. Yet, other days, Katie found herself lost in the past, trying fervently to recreate the mother she once knew. Only those who have taken on this role can truly grasp the pain of watching a parent decline. Ultimately, Katie realized that she owed it to her mother to switch roles and alter the way she viewed the disease. Even though this disease is fatal, Katie adjusted her perspective by engaging with her mother in ways that were more helpful than stressful.
“I had to be aware of what I was asking her because I didn’t want to add to her frustration. I just had to meet her where she was.”
While there are times of pain for families having a loved one with Alzheimer’s disease, Katie wants others to know that there can still be times of joy. Recounting old memories and creating new ones can be such joyous times.
“We’ve got some of the funniest videos of my mom just chatting away about nonsense,” recounts Katie. Despite her declining body and jumbled thoughts, I knew my mom was still in there. Creating and having those memories is like seeing the light at the end of the tunnel. While there are struggles, it’s amazing to know that new things can be learned, memories can be created, and love can be shared. It’s important to continue recounting the positive parts of the experience, as that can lead to creating more strength, desire, and passion to support those with the disease and their caregivers or family members.
On the day that her mom passed, Katie found herself once again floating on waves of wonder and asking herself, “Now what am I going to do?” Alzheimer’s stole her mom from her — one memory at a time, one day at a time. Without question Katie says she would rather have her mom here, living life free from pain, but she feels blessed to have walked with her mom until the very end. While sharing her story often brings tears to her eyes, Katie feels empowered from the experience. In many ways, Katie believes her mom’s death has made her a better person and she feels more equipped to help others navigate these scary waters. Katie says “I have been given a unique opportunity to contribute to the greater good by turning my experience into inspiration for others.” If given any little window or crack, she will share her journey with anyone who will listen, in hopes that they connect with her and support the Alzheimer’s Association. It is her desire for everyone to realize that our actions, no matter how big or small, are powerful tools that can help raise awareness for this fatal disease.
In searching for a way to honor her mom’s memory, Katie discovered The Longest Day, the Association’s second signature fundraiser. Owners of The Racquet Club at Seven Lakes, Katie and her partner, Canyn, fundraising idea began with Katie just watching a tennis player play from morning to evening, and collectively, they, thought that it would be a great idea for a fundraiser event. The duo hosted their first Annual The Longest Day fundraiser by “renting” their pickleball and tennis courts throughout the day. Their goal was to fill their courts with players from sunup to sundown. As a result, with their community’s support, they successfully raised $15,000 and their event was recognized as a Top 50 fundraiser for The Longest Day worldwide, solidifying it as an annual event for them.
This year, they are not only hosting their 2nd Annual The Longest Day event on June 18, but they have activities taking place across Moore County from June 11-18 that they are calling The Power for Purple Palooza. Not only will their plans include tennis and pickleball play, but they will have activities for all ages! The week includes an immersive murder mystery dinner, golf outings, movie night, give back nights, and even a smores event. The main event on June 18, will include a 5K fun run, silent auction, raffles, a corn-hole tournament, inflatables and games for children, food trucks, beverages from local breweries and wineries, and DJ. And the entire week will conclude with a free live concert that evening.
Their goal this year is to not only to raise $20,000 for the organization, but to have fun and involve the entire community. “We want to reach as many people as possible, not just tennis and pickleball players”, says Canyn. Their excitement is seeing people of all ages and in all walks of life come together for a purpose larger than themselves. For Katie and Canyn, the bigger picture is that they have stepped outside of themselves to realize that The Longest Day isn’t just solely about honoring Katie’s mother, but it is also about joining the fight and continuing to fight for Linda and others living with Alzheimer’s disease.
“We fight for those who can’t remember,” said Katie. “Alzheimer’s is a disease of loss but it should never be one of loneliness. This is not just for my family. I would do it for anybody.”
It’s up to Katie, Canyn, supporters of the Association, and others to continue to acknowledge and fight for those impacted by Alzheimer’s disease and other forms of dementia. Just like The Longest Day is held on the day with the most light, they will continue to shed even more light on the disease to show support. Katie asks you, “Now what will YOU do?”
Honor those who can’t remember. Remember those who can’t remember. Fight for those who can’t remember, always.
LIKE KATIE AND CANYN, WE ALL HAVE A REASON TO FIGHT FOR A WORLD WITHOUT ALZHEIMER’S DISEASE. Simple plans up to big ideas – Start planning your own The Longest Day Fundraiser today.
The day with the most light is the day we fight! Leading up to and culminating on The Longest Day – the summer solstice, thousands of participants from across the world will come together to fight the darkness of Alzheimer’s through an activity of their choice. Together, they will use their creativity and passion to raise funds and awareness for the care, support and research efforts of the Alzheimer’s Association®. Whether participating at home, online or in-person, we have plenty of fun ideas to engage family and friends in The Longest Day.
ABOUT THE AUTHORS:
Briana is an alumna from the University of North Carolina at Charlotte with a Bachelor of Arts degree in English and a Master of Arts degree in Communication Studies. As a current copy editor, she dedicates her time to The Longest Day committee in remembrance of both of her great-grandmothers and to support the association.
Co-Owner of The Racquet Club at Seven Lakes and former elementary school teacher. She uses her talents as a coach, teacher, and mentor to inspire kids to become and stay active. As a member of the committee for The Longest Day, she uses those same talents to motivate and encourage individuals to be creative in their fundraising efforts on behalf of the Alzheimer’s Association.