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YA A to Z: Alzheimer’s As a Means to an End, a guest post by L. B. Schulman

It’s the second week of January, which means we’re discussing the Letter A in YA A to Z. Today we are talking about alzheimer’s with author L. B. Schulman. You can find out more about YA A to Z here.

yaatoz

My stepfather, Tom, achieved permanent sobriety the year I turned 13. Unfortunately, decades of alcohol abuse would affect him in ways that my family couldn’t predict. Only ten years after he took his last drink, he was diagnosed with what doctors assumed was Alzheimer’s but turned out to be Lewy Body Dementia, a disease that shares many of the same symptoms. His doctor concluded that alcoholism had a role in triggering this specific form of dementia. Sadly, Tom passed away in 1999.

Latest Facts & Figures Report | Alzheimer’s Association

While writing Stolen Secrets, I struggled to create the character of my protagonist’s grandmother, Oma. One thing I knew about Oma: She had a secret that negatively impacted her family, and yet I didn’t want her to blatantly lie to her granddaughter, Livvy. It was important to me that readers liked Oma, and hey, no one cares for a liar.

stolen secrets

From a literary standpoint, Alzheimer’s was an excellent tool to do all of this and more. Oma could neither fabricate nor tell the truth because the disease had robbed her of knowing the difference. This made it less likely that readers would blame her for what Livvy goes through in order to uncover the truth. I also hoped that readers would feel empathy for Oma’s suffering. Case in point: Her violent reactions to dogs because she can no longer differentiate house pets from vicious attack animals owned by the Nazi’s in Bergen-Belsen.

Resources for Children and Teens About Alzheimer’s Disease

As I discovered with Tom, not all personality changes brought on by the progression of dementia are categorically “bad.” What came out of his mouth could be surprisingly humorous at times. Also, without a fully-functioning memory, he couldn’t hold on to unhelpful emotions like resentment. Although Livvy’s mother recalls her own mom as being cold and unloving, this turns out to not be Livvy’s experience with her grandmother. Much of the time, Oma is affectionate, amusing and sweet, having forgotten the defenses she created to protect her secret in the first place.

I remember how my stepfather’s illness made him appear childlike at times. In surprising ways, he became more endearing as he deteriorated, rather than less so. I believe that this quality was partly what kept my own mother taking care of Tom at home instead of putting him in a nursing facility. Livvy also finds Oma’s new youthful exuberance to be charming, such as when Oma dances around the house in her underwear, free of the social constraints that restrict adults.

WHO | 10 facts on dementia

As I mentioned before, the disease served as a vehicle to maintain a fictional mystery. Without the boundaries provided by a healthy brain, Oma’s immense guilt over a past unsaid could trickle out like a leaky faucet. Some facts slipped though while others became stuck. Much of what she said seemed to warp in ways that felt impossible for Livvy to untangle. I remember once asking my stepfather what he’d had for dinner, and his answer was a lyric from an old Petula Clark song. Dementia turns “memory lane” into a minefield; however, these limitations worked as an effective plot tool because they forced Livvy to unravel the past in proactive, rather than reactive, ways.

I relied on research to pinpoint the exact stage of Oma’s illness: mid-to- advanced. Why so specific? Because these exact symptoms worked best to present clues that could be misinterpreted. For example, Livvy asks Oma to read something. Oma can’t do it. Livvy believes that her grandmother’s inability to read is a function of the specific stage of dementia, which turns out to be a faulty assumption. (Don’t worry, that’s as close to a spoiler as I’ll get.)

Although Alzheimer’s suited my purpose as an author with a plot to tell, there was another reason I wanted to write about the disease Many teens (as well as adults) are facing dementia-related diseases at this very moment, and yet almost no young adult books mention them. The pain that Livvy feels when Oma calls her by the wrong name, for example, is a heart-breaking but common experience for family members who care for a loved one with dementia.

I wrote this book in part to highlight a disease that needs to be talked about. The statistics are scary as our Baby Boomer generation ages. In 2017, Alzheimer’s cost our nation $259 billion. By 2050, those costs are expected to top $1.1 trillion. This year, there are five million Americans living with the disease. In 2050, it’s expected to affect 16 million. The only way around this burden is to find a cure for dementia. Scientists are working diligently on this right now. They need our help. Charitable donations are an investment in our world’s well-being—perhaps one day, even our own or someone we love dearly.

I hope you will get to know Oma as Livvy does—to feel emotionally moved by her painful outbursts as well as her childlike simplicity and affection. Perhaps Livvy’s story will connect readers to human frailty in new ways. Until the time comes when the youngest readers of my book can afford to help the cause financially, my desire is that Stolen Secrets, like the books I inhaled as a teen myself, can heighten empathy in ways that make all of our lives better.

Meet Author L. B. Schulman

STOLEN SECRETS is L.B. Schulman’s second young adult novel. Her debut, LEAGUE OF STRAYS, was published in 2012. She grew up in Maryland and now lives in the San Francisco Bay Area with her husband, two daughters, and a pair of loveable mutts. When she isn’t writing, she’s visiting genealogy sites, trying to find famous people she’s related to. You can visit her online at LBSchulman.com.

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