By Christina Consolino, Ohio, US
Summer 2015 began with a bout of shingles for my dad, who then fell multiple times. A short stint in rehab followed by PT and OT at home meant that my sisters and I, all of whom lived out of town, had to put our lives on hold and help Dad recuperate. Mom didn’t have the physical capability or medical knowledge like we did, or, as we found out during our time with our parents, the cognitive ability. When Mom made a large error in judgment that could have resulted in disastrous consequences, we pushed for a neurological evaluation of her, which led to a diagnosis of probable Alzheimer’s.
Mom had been exhibiting symptoms of memory loss for years, but neither Mom nor Dad wanted to own up to the idea that dementia might be a possibility, even though Mom’s mom had also had the disease. My parents’ ability to deny the truth seemed to grow with each season, even as Mom’s capabilities dwindled.
When Mom was diagnosed, I looked to websites, blog posts, and books, both nonfiction and fiction, to find a story to help us navigate the waters. Plenty of touching, heartfelt stories and informational texts existed, but I wasn’t finding a story quite like ours—one in which the pre-diagnosis stage was as heavy a burden as the post-diagnosis stage. One in which denial swamped the person living with dementia and their spouse. One that captured the turmoil, the angst, the weight that can come with medical crises and diagnoses. That’s when I decided to use our experiences as inspiration for my novel, The Weight We Carry, with the intention of providing an authentic look at what can happen before and after a dementia diagnosis. The story features characters that don’t accept a diagnosis with grace and poise and a timeline that shows even getting to the diagnosis stage can be an arduous journey. The story also emphasizes that denial can run so deep in some folks—either those living with the disease or the loved ones taking care of them—that they never accept their new lives or the future that is to come.
Our story is but one of many, and it could be your story. Or your neighbor’s or friend’s or colleague’s. My hope is that anyone dealing with the “long goodbye”—patients, caregivers, spouses, family, and medical professionals alike—will understand that they are not alone on the journey, that the weight they carry is understood by many, and that asking for help or support will benefit everyone.
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About the Author
Christina Consolino is the author of The Weight We Carry and Rewrite the Stars, and the co-author of Historic Photos of University of Michigan. She also writes romance under the pen name Keely Stephens. Along with teaching, she freelance edits both fiction and nonfiction. Warm cups of coffee, good books, and long runs outside are some of her favorite things, and if she had her way, our days would be filled with nothing but joy.
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