By: Jennifer Steck
Our family unknowingly began this journey about five years ago. It started with memory loss – repeating the same questions, forgetting how to use the microwave, and getting lost when driving to a friend’s house for book club – somewhere she’d been dozens of times before. Over time, the losses became more profound – the inability to count money when it was time to pay for a haircut, her choice to stop driving altogether due to the fear of getting lost or hitting the wrong pedal, her inability to write even her own name, and her continued difficulties expressing herself with the right words. By the late summer of 2016, it had become a challenge just to make it through each day as she battled a cycle of insomnia and terrifying nightmares, thoughts that we were trying to hurt her, and often didn’t recognize us at all. We were faced with the terrifying realization that we were losing her – quickly. In October of 2016, at 63 years old, Mom was placed in a nursing home, requiring 24-hour care for a rare type of frontotemporal dementia.
My husband, Shad, my two boys, Tyler and Easton, and several of my coworkers joined me in the Walk to End Alzheimer’s in September of 2016. It was the first Walk for all of them – and only my second. Ironically, I participated in my first Walk alongside my mom many years ago in honor of her father, my Papa Ralph.
At the Walk, I felt overwhelmed listening to Chris Postin and others share their stories of caring for someone with Alzheimer’s disease. I couldn’t fight back the tears as I watched so many others lift their yellow and orange and purple flowers in silent acknowledgment of their own personal battles. For the first time since we began our journey, I didn’t feel quite so lost or alone. Caring for someone with Alzheimer’s, or any dementia, can be very isolating– both by the nature of the experience and often self-imposed. As with almost any situation, it’s difficult for anyone to truly understand what you’re going through if they haven’t been through it themselves. And, it has been incredibly important to us that we protect Mom’s dignity and legacy.
Mom’s legacy isn’t her illness. Hers is a legacy of love for family – as a devoted wife of 45 years, a mother to two children, a grandmother to four perfect grandchildren, and as a daughter and sister. It’s a legacy of service to others – to her community as a volunteer for numerous organizations, to her church, and 18 years as a children’s librarian at the Galesburg Public Library. It’s a legacy of friendship and putting the needs and interests of others ahead of her own.
While she will not be defined by her dementia, her illness and the experiences it has brought are certainly helping to shape our family. We can’t control what’s happening, but we can control our response. We work hard to find the small blessings of each day – some days it’s harder than others. But, we’re holding dear the little joys like a smile, a kiss, a funny face, feeding Mom one of her favorite foods, her strong grip on my hand or arm when she’s trying to tell me she’s not ready for me to leave, or just sitting quietly and watching her rest peacefully. As virtually all language has been taken from her, a clear “I love you” or “Thank you” means so much.
There’s no cure yet that will save my mom. But I’m hopeful that I live to see the day when the first survivor beats Alzheimer’s disease – and other similar dementias. We have the opportunity to support the efforts of the Alzheimer’s Association and other causes by raising money for research and support services. We can help further much-needed research by making arrangements for brain donation – as our family has already done through the Mayo Clinic, with the assistance of the Brain Support Network. In the meantime, and maybe more important than all of this, we can share our stories and help support each other. On Walk Day, we’re reminded that we don’t have to fight this battle alone.