Dancing with Schizophrenia: Growing Up in the Shadow of a Mother's Mind

I have my mother's hands

I have my mother’s hands. Sometimes when I paint my nails, I see her clasping each thumb with her index and middle fingers. She holds them tight like a thumb sandwich.

“What are you doing, Mom?” I asked the first time I saw her doing this.

 “Keeping my soul from escaping through the portal,” she told me.

Back then, I’m sure I giggled. My mother always had a quirky way about her, but once I began attending after-school play dates at my classmates' homes, I started to compare “mom behavior.” That’s when I started to become aware, and sometimes embarrassed by my mother’s ways. However, I prefer to reminisce about the days of my childhood before Mom’s first break with reality.

Before the Break

I remember how Mom would stack a pile of forty-fives on the record player and dance around the house. The bellbottom sleeves of her mini dress would swing rhythmically as she danced the Mashed Potato or The Pony to her favorite songs by The Shirelles, Chuck Berry, or The Supremes. Though it appeared she hadn’t a worry in the world, she carried the world on her shoulders. Only twenty-one when my father abandoned her with three children, no education, or a job at the time, she made the best of what she had.

During the early years, Mom stretched a food-stamp dollar to the max. Thinking back, it amazes me how she could make four sandwiches with one small can of tuna. She was creative and resourceful. Paper towels ripped in half doubled as napkins, tissues, and sometimes, even toilet paper. Shampoo mixed with water at the halfway mark kept our hair cleaner longer, and a bar of soap remained in our bathtub until it turned to pat.

Though Mom appeared happy and fancy-free most of the time, as I grew older, I began to carry my own burden as I noticed her erratic behavior. Lost jobs, found men, and ultimately an overnight disappearance sent our world into a spin.

Only eighteen, and the eldest of three, with no extended family nearby, I watched an ambulance haul Mom off to a psychiatric hospital.

The Reality of it All

At our first meeting with a psychiatric counselor, we learned about Schizophrenia and the symptoms, as well as the medications Mom would need to take. Listening to him describe the possible side effects frightened me. Too young to know what questions to ask, I listened, holding back tears. Not long after Mom’s return from the hospital, she stopped taking her medicine, and a cycle began, which resulted in one hospital stay after another.

Finally, a new doctor informed us that my mother didn’t have only Schizophrenia, he dubbed her with a diagnosis of schizoaffective disorder. At first, I breathed a sigh of relief. My naïve, teenage mind believed the doctor would share how Mom could live an “effective life” with Schizophrenia. After more hospital visits and discussions with doctors and therapists, I learned what schizoaffective really meant. Mom had bipolar disorder and schizophrenia, a rare and extremely difficult illness to treat “effectively.”

Left to fend for ourselves, my siblings and I became caretakers of Mom, and we navigated the best we could through the mental healthcare system. Our journey began over thirty years ago and continues. During those years, Mom did the best she could, but her condition worsened, and she became harmful to herself. When we learned she could unintentionally harm someone else as well, we began to seek a place where she’d get twenty-four-hour supervision. Only by this time, the doors of long-term mental facilities had closed (for good reason), the system no longer supported her, and she no longer cared.

The Only Solution

My mother now resides in an Alzheimer’s unit in a home because there is no long-term facility where she can receive care and safety for her condition. It’s not the optimal place to meet her special needs, but she’s safe, and that allows me to sleep at night. Though my mom has a dual mental illness diagnosis, she doesn’t have dementia or Alzheimer’s disease. She doesn’t understand why she’s not free to come and go as she pleases. She doesn’t understand why the people around her can’t remember their names or must wear adult diapers. She’s physically healthy and only seventy-two years old.

I have my mother’s hands. I see them when I type during the many hours I spend writing at my computer. Sometimes the memory of her distracts me when I think of the woman she was before her soul escaped through the portal. Recently, I found a book of poetry she had written during her mental decline. Part of the poem reads:

We have to dance

To whatever

Medical science tells us.

Are we just fools? If someone’s right, God made it right.

Who is kidding whom?

Just let me listen to the music.

For music is magic healing to me.

And I’m sure many others would agree.

I have my mother’s voice, and, ironically, I’ve made a living singing for residents in Assisted Living and Alzheimer’s facilities throughout New Jersey. My mother gave me the gift of music, but I can’t sing for her anymore. But before she stopped communicating with me, she taught me many lessons. One of which is to put myself in others' shoes before making judgments or assumptions without knowing or understanding the backstory of a person’s life.

In the meantime, for those of you who have a mom like mine, I hope you hold the good memories close and remember the happy days when only one voice inspired her to laugh and smile. If you are fortunate enough to be able to share a moment in between the confusion, as Lee Ann Womack sings, I hope you dance.

Copyright: Wendy Lynn Decker 2018  

Update: My mother passed away in 2022. I believe the lack of good mental health care facilities could have prevented that from happening.

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