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What Alzheimer's Disease Taught Me - A Narrative Dedicated to Mom

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At eight years old, I skip up the front steps to my grandparents’ home. Sporting ruby red shoes, a blue plaid dress, and my hair braided to each side, I am ready for the school production of The Wizard of Oz, and even more excited to show my grandparents just how hard I’ve worked to memorize my lines.

The door cracks open, and Grandma doesn’t recognize me. She looks scared and suspicious. “Who are you?” I can tell by her expression that this is not a joke. Before I can register what’s happening, my mother laughs it off and says, “come on, Mum. We’re picking you up for Rachel’s play.” She hurries me down the steps and into the car, and I giggle nervously to stop myself from crying.

 As a young child, I had no idea what Alzheimer’s was. I couldn’t process the concept of a brain beginning to deteriorate and lose its primary function, and I certainly didn’t know that it could be happening to my grandma. I could, however, hear my mom’s voice tighten up, sense the pain in her voice, and feel the awkward silence in the car. That evening, I began to learn the hard way: Alzheimer’s is a family disease.

I watched the disease progress for 8 years before my grandmother passed at the young age of 72. For 8 years, my family grieved, but we also celebrated the small victories. Despite how cruel this disease can be, I was always able to experience glimmers of hope and joy. Sometimes, Grandma would have moments of clarity. We’d see glimpses of her personality during our visits to the memory unit. Despite the hardship, it brought us so much joy to witness those brief moments of familiarity: a mischievous smile and a wink while she pocketed cherry tomatoes from the garden; a warm smile stretching across her face while going through photo albums. Even though Grandma didn’t recognize my mom as her daughter any longer, during our visit on Mother’s Day she apologized for an argument they had years ago in the early stages of the diagnosis. I’ll never forget the way mom’s eyes watered up with happy tears when Grandma said to her, “I don’t know why I was angry, but I remember and I’m sorry I yelled.” This moment of clarity brought peace to my mom’s heart, and I saw in that moment that it brought peace to my grandmother too.

Despite the suffering that comes with Alzheimer’s, there is an opportunity to develop a profound capacity for patience, understanding, and growth. Alzheimer’s disease taught me how to simply love people where they’re at. Frustration, self-pity, and grief are normal reactions, but there is a way to leave those emotions at bay and treasure the happy moments amidst all the pain. I learned how find the good in even the saddest situations. Experiencing the disease at a young age taught me how important it is to bring joy to the individuals who are suffering from this disease, even if it’s only fleeting moments of joy. It took a long time to practice, but has ultimately shaped me into the person I am today. Alzheimer’s and its effects taught me how important it is to cherish my sense of self; that memories are treasures to enjoy as often as possible. Alzheimer’s taught me to be of service to other people in all my affairs; that even the smallest acts of kindness are profound and lasting. The compassion and understanding that I learned to develop for my grandmother as a little girl shaped me. I learned how important it is to bring a little light into the lives of individuals with a disease that generates so much darkness. There’s a poem written in the voice of someone suffering from Alzheimer’s disease that emphasizes the compassion, patience, and love that must be practiced as a caregiver or loved one. This poem reminds me to hold on to the joyous moments during such a difficult journey, and I encourage you to do the same:

Do not ask me to remember,

Don’t try to make me understand,

Let me rest and know you’re with me,

Kiss my cheek and hold my hand.

I’m confused beyond your concept,

I am sad and sick and lost.

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me,

Do not scold or curse or cry.

I can’t help the way I’m acting,

Can’t be different though I try.

Just remember that I need you,

That the best of me is gone,

Please don’t fail to stand beside me,

Love me ’til my life is done.

                                                                 -Owen Darnell