Editor’s Note: This is the first in a series of essays by guest contributor Karen M. Thomas as she explores life with a mother suffering from a debilitating disease.
My mother has Alzheimer’s disease. Those five little words have dramatically changed all of our lives – hers as she battles this extremely cruel disease, her three children as we struggle to care for her, and her friends and extended family who continue to love her even if it is now from afar.
I already know how this story will end. It’s not pretty. But the facts are there in black and white: Mom has a fatal disease that is stealing her away brain cell by brain cell. What I didn’t understand, what I couldn’t know at first, is how we would all learn to live with Mom’s illness. And we are living. Yes, there are days when the grief comes in waves, leaving me drowning in sadness. But there are times, too, when I have learned to steal right back, snatching our joy.
Mom lives in a Texas memory care facility near my house. I took her from her New Jersey home more than a year ago after my brother spent nearly a decade caring for her. It’s my turn to soldier her battle. But life is never that simple. I’ve also had to learn how to parent my two girls as I tend to my mother. I have five new words: I am the sandwich generation.
It looks something like this. On a recent night, I took my youngest daughter, 13-year-old Brooke, to family Hawaiian night at Mom’s facility. In the community room, residents and their families sat at long tables festooned with tropical fruit centerpieces, and we placed plastic leis around our necks.
Then dinner arrived, plates piled with rice and chicken kebobs. To my left, Brooke struggled to get her chicken off the sharpened stick. To my right, my mother attempted to place the sharpened end in her mouth. As I toggled back and forth un-spearing meat and taking away spears, I began to get angry. Whose brilliant idea was it to serve dementia patients dinner on a sharp stick and then invite their grandchildren along for the fun?
Suddenly, at the front of the room, music started and Polynesian dancers bounded into the room, their bare feet pounding the floor and their grass skirts swaying with the motion of their hips. Mom clapped in delight. Brooke giggled. And before I knew it, Mom and I stood at the center of the room with the dancers, trying our best to imitate their moves. Brooke, at 13, was too cool to dance. But when I looked at her, we both dissolved into laughter, lost in the silliness of the moment.
When I hugged my mother goodnight, she smiled and patted my back. She was tired and happy, ready for sleep. Brooke chattered beside me as we drove home, her smartphone eerily silent. As I drove, I realized that during the spear debacle, I never really ate. But it didn’t matter. I wasn’t hungry. Somewhere deep inside, I was already quite satiated.
Karen M. Thomas teaches journalism at Southern Methodist University. For more on Karen go here.
