I can’t imagine ever forgetting my baby’s first steps. What on earth can take away the image of my children’s smiles? How could it be possible that I could not remember the sounds of their giggles? If you are reading this article, you probably know that Alzheimer’s disease can overpower them all. It breaks into a brain and strips away even the most cherished, deeply imbedded memories—those we count on to nurture us and comfort us throughout our lives.
Alzheimer’s disease is not content just to take the diagnosed individual. It wants the entire family. A stranger moves into your life and begins to rewrite your story, causing loved ones to watch a virtual death in slow motion.
My mom began to disappear at a young age. She was in her late 50s when her personality started to change. Even though her own mother, my granny, had struggled with “senile dementia” we were too afraid to acknowledge the fog closing in on my mother.
Mom was a strong young woman with dreams much bigger than her small hometown in South Carolina. Taken by Alzheimer’s disease with music still in her, my mother’s story is still largely untold and the back half of her life unlived. Mom exists now in a trance-like state. Not only has she forgotten everything about her rich and wonderful life, but also all of us who love her are at risk of forgetting who she was before the thief.
She always used to tell me, “Honey, God has a purpose for all of us and isn’t it wonderful that you found yours so young.” She was right. From the sixth grade I knew I was a storyteller, and I’ve had phenomenal experiences and opportunities to tell myriad tales—none being more important than my own family’s journey with this disease. We were, as everyone is, numb with fear and so caught up in the crisis that we were barely able to measure the effectiveness of what seemed like each enormous decision. It’s because of our frustration that I formed The Leeza Gibbons Memory Foundation and then that we began to create Leeza’s Place.
My mother insisted that I use her story to educate and inspire. Because of the shame and stigma associated with this diagnosis, educating families and empowering them with the information they need is sometimes a daunting task. At Leeza’s Place, we provide an intimate, safe setting for those newly diagnosed with Alzheimer’s disease and any other memory disorder, and their caregivers. We offer a web of support, a harbor from the storm of confusion. Facing something so frightening is a “Herculean” task and we have created programs at Leeza’s Place, like our scrapbooking and Memory Television, to help. Only with support can anyone find the energy to make sense of this diagnosis.
At our AFA Leeza’s Place of Manhattan, I’ll never forget meeting four generations of a Cuban-American family while they were preserving their life story through “LMTV.” The youngest daughter was pregnant. The matriarch of the family had Alzheimer’s disease. All the women were passionate about leaving a message for that unborn child. If abuela could no longer remember and could no longer find the words, she wanted that grandbaby to know why they should love America and what their freedom meant to them.
We are blessed in our family: my mother courageously faced the diagnosis and made her wishes known. She told us that when she could no longer call us by name, she didn’t want to live at home anymore. She said, “When I kick and scream and beg you not to leave me, know that is the disease talking and not me.” It will be different for each family, but the point is to encourage those diagnosed to participate in their own care. It is enormously frightening to watch someone you love change and slip away. Families have enough struggles without having to unravel at the seams at exactly the time when harmony and strength are needed most.
That’s part of my story as a daughter; as a mother myself, it is every bit as challenging. My children have seen me cry over Mom. They have seen me commit time, money and energy to the crusade to help others and hopefully find cures. Still when they first asked me, “Mom, will you get it?” I was stunned and forced to say aloud what we already knew, “I don’t know.” I assured them that I was doing everything I could to manage my risk and that along with many others we were trying to unlock the mystery of this disease so they will never have to face it.
Since my mother’s diagnosis, I have become acutely aware of memories and moments that hold special significance. Even though my mother is in the final stages of the disease, on the occasion of my parents’ 50th anniversary, Daddy bought her a pink corsage and somewhere deep in her core she “remembered” enough to stand up and dance with him when we played their song, The Tennessee Waltz. A quarter of a century earlier, on their 25th anniversary, my mom and dad sat in front of a fire and reread aloud the love letters that they had written each other.
They both commented at the time that they could remember every word, every line that was etched in their hearts. And so, as they read the letters, they threw them in to the fire, confident that they didn’t need the physical reminders. Mom did forget the words of those letters and no longer remembers being the young girl who got married at 17, and gave life to three children and many adventures.
Life doesn’t come with guarantees. With Alzheimer’s disease in your family it seems to come with a clock…counting down to some unknown deadline. Waiting for Mom to reach the end is often unbearable.
I sat with my mother recently and I held her hand, looking for some flicker in her eyes, some little kiss from the angels telling me she was still in there. I told her that I was doing what she had asked; I was telling her story and that her love and energy was being put to great use. She squeezed my hand. An involuntary muscle reaction? I don’t think so.
My brave beautiful mom wanted me to promise that I wouldn’t visit her when she could no longer call me by name. I told her that was a promise that I couldn’t keep. Love never forgets, and every time I see her I am reminded of all the other caregivers, sitting with someone they love, as they live the long goodbye.
Leeza Gibbons
