My mom has aphasia. Her diagnosis gave me a sense of relief.
My mom was in a nursing home in Ohio when she jumped out of a window.
She had vascular dementia and severe aphasia caused by a stroke.
Her diagnosis gave me answers to her erratic behavior and a sense of relief.
My two young daughters, my husband, and I were in a COVID-19 lockdown in New York City when police in Ohio called at 5 a.m.
"Your mom jumped out of the nursing-home window," the officer said. I wiped the sleep out of my eyes. "We found her with one shoe on, shivering in the cold, walking toward the highway," he added.
She was safe now in the hospital and given a diagnosis of vascular dementia. A few weeks before, on April 1, 2020, she had a devastating stroke that left her with severe aphasia, a language disorder she shares with Bruce Willis and an estimated 2 million other Americans.
"In grave ran dark," my mother sobbed to me over the phone.
My heart broke as I couldn't help her. Before her stroke, we didn't talk as often as I would have liked. We had a complicated relationship after I endured a poverty-stricken childhood in which my needs like food, shelter, and an education were often lacking.
"Help," she cried before the nurse took the phone and said she needed rest.
This was not how I envisioned our reconciliation.
Her sentences didn't make sense
After she was discharged from the hospital, my mother was prescribed Lexapro, Luvox, and Seroquel. She seemed calmer and laughed more. Home care cost about $2,000 a month, none of it tax-deductible. The agency paid workers $12 an hour.
On bad days, my mother wept like a whimpering hurt cat. She was more vulnerable than I had ever witnessed, and we had gone through a lot together. Then the unimaginable happened: My family got COVID-sequestered in our apartment, and she and I began to talk — every day.
Even when her sentences made little sense, I played a kind of verbal charades with her word-salad speech for hours. Over the next year, her speech improved, perhaps because of the time I spent talking to her. We reconciled, and I thought all was right.
But her erratic behavior continued
It wasn't long before she snuck out to her pickup truck, and after a spat with the neighbors, she almost ran them over. Months later, my mother hit a police car, she ranted and raved about my sister, and she told Adult Protective Services that we had stolen from her.
Because of the erratic behavior over time, she was diagnosed with Lewy body disease and lost her driver's license. It was devastating for her to lose control of almost everything. For me, like Bruce Willis' family says, the diagnosis gave me relief and answers.
My mother is not perfect, nor am I, but we're closer than ever before. I'm thankful we have a chance to listen to each other's pauses and breath when words fail us both. I'm glad I've been given a second chance to say I love you to my mom. She often can't form the words or forgets to say them back to me. And that's OK. I know I'm loved by my daughters and husband, and that's enough.
Her diagnosis, at times unbearable, has given me my life's purpose to let others know they are not alone in their struggles and to dissipate the stigma that comes with brain disorders. While we need more trained healthcare workers to accurately diagnose a tricky disorder — one that often overlaps or mimics other conditions — I'm fortunate to be able to be there for my mom.
When my mother can't find the words to speak, she whistles and sings in a high soprano like the beautiful angel she was meant to be her whole life. My mother's not letting the disease define her. She's defining it.
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