Raise Your Voice About Alzheimer's

This is the last in a series of guest posts about Alzheimer’s and caregiving as the #AlzAuthors Ending the Isolation of Alzheimer's campaign comes to a close. Throughout November, I partnered with four other authors of books about Alzheimer's to raise awareness of this horrific brain disease that affects 5.3 million Americans and each of their loved ones, and to honor  their caregivers, both paid and unpaid, during Caregiver Appreciation Month. We also went on a crusade to increase awareness of the importance of annual memory screenings during National Memory Screening Week, November 1-7. 

It has been a whirlwind 30 days of blogging, sharing on Facebook and tweeting our messages to a worldwide audience. With this last post I leave you with a message from Shannon Wiersbitzky, author of What Flowers Remember, a children's book that gently describes Alzheimer's. Shannon urges us to keep the conversation going, to speak out about our concerns and experiences, to let others know they are not alone in their Alzheimer’s journey, and to demand that leaders in government, medical research, and healthcare continue in their quest to find a cure.

Raise Your Voice About Alzheimer’s

by Shannon Wiersbitsky

Alzheimer’s is a disease that steals memories. Robbing people, both old and in some cases, not so old, of entire lifetimes. Of connections to friends and family, and of recollections of the life experiences that serve to make them completely unique.

Too often, Alzheimer’s also steals our voice. The disease is not spoken of much publicly. There is a certain stigma associated with losing memories, a certain shame. Of course there shouldn’t be. It is as uncontrollable as cancer, and yet a shroud of silence surrounds it.

According to Dr. Jason Karlawish at the Penn Memory Center, it typically takes one to two years to convince a person with memory issues to come in for an assessment. Two years. There are annual checkups for so many aspects of our health, why is the brain overlooked? 

When I wrote What Flowers Remember, a middle grade novel about a young girl who tries to save the memories of an elderly neighbor, I was shocked to learn that it was one of only a handful of novels for children ages nine to thirteen that dealt with the disease. Even more surprising were the conversations I began having with friends. People I’d known for years who read the book and then shared their experiences with the disease. 

It was as if a secret password had been spoken. I’ve been forgotten too. And that was all we needed to kick start the dialogue. 

This past June I attended a community event at a theater company in my hometown. They hosted a talk about memory loss and Alzheimer’s. The rain poured that day and yet the room was packed. Caregivers young and old filled the seats, each one craving conversation and understanding, some seeking resources or guidance, others simply wanting to see in the eyes of those further along with the experience, that life does go on eventually. 

We need a different language for Alzheimer’s. One where story and narrative help to drive a conversation. A free-flowing and open dialogue about experiences, fears, joys and sorrows. 

I have that kind of dialogue with four authors I know. Each of us has experienced Alzheimer’s in a different way. And each of us wrote a book, to help ourselves, and certainly in the hopes of helping others. 

Among the five of us, four have been forgotten. Two by parents, one by a grandparent, one by patients. The fifth is in the process of forgetting himself.

We meet regularly via video chat. We share emails. We do all that we can to raise awareness of Alzheimer’s. To shout about it from the heights of whatever soapbox we can manage to climb. 

Jean Lee lost both her parents to Alzheimer’s. She wrote her memoir Alzheimer’s Daughter because it was what she needed to read. The story spans nearly a decade, from daughter Rosie’s first suspicions that something is awry to nearly a decade later as her parents, Ed and Ibby, draw their last breaths. 

Marianne Sciucco, a writer who happens to be a nurse, was inspired to write her novel Blue Hydrangeas based on the many experiences she had with families facing the decline of their loved ones with Alzheimer’s and wanting to preserve both their dignity and well-being. 

Vicki Tapia also faced the struggle of caring for two ailing parents. Her mother was diagnosed with Alzheimer’s, followed closely by her father with Parkinson’s related dementia. Her memoir Somebody Stole My Iron offers a glimpse into the ups and downs of life with memory loss and provides readers useful information and tips for coping. 

Greg O’Brien was diagnosed with early-onset Alzheimer’s. On Pluto: Inside the Mind of Alzheimer’s is a book about living with Alzheimer’s, not dying with it. Acting on long-term memory and skill coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. 

I lost my Grandfather when I was in my early thirties. And he lost me. I’ve written about it before.  And I keep writing about it. Why? Because it is impossible to understand how someone you love, who loves you so much in return, can forget you. 

Reading helps. Talking helps. Community helps.

Through all of those things we begin to heal. We laugh and cry, realizing that we aren’t the only one who has experienced the pain. Our conversations put an end to the isolation and stigma that Alzheimer’s can bring. 

So let this November be the month we began to share. Let’s continue to create that new language. Together, our voices can stamp out the stigma of Alzheimer’s. I can’t wait to hear the chorus. 

To learn more about the #AlzAuthors and their books please visit our web page. 

And follow #AlzAuthors on Twitter and Facebook.

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