Monday, November 30, 2015

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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Friday, November 27, 2015

12 Titles to Begin the Dialogue About Alzheimer's


My special guest today is middle-grade author and blogger Shannon Wiersbitzky. Shannon is a driving force in #AlzAuthors. Her book, What Flowers Remember is one of the few titles in Alzheimer's written expressly for children. Children are often on the perimeter of Alzheimer's disease, silent observers, sometimes caregivers in their own right. They represent an important part in the collateral damage the disease leaves in its wake. Shannon speaks to us today about a helpful collection of books on  this subject for children and adults, books that can help start a conversation about Alzheimer's, books that enlighten and educate. Welcome to Adventures in Publishing Shannon!

12 Titles to Begin the Dialogue About Alzheimer’s
by Shannon Wiersbizky, author of What Flowers Remember

There is a quote by American author Anne Ursu that I have thought about many times while writing. “Books put names on big feelings and then make them familiar and okay. And they tell you you are not alone in feeling them.” As I like to say, less eloquently, books help people cope. 

Mix the healing power of books with a disease that is often shrouded in silence and you get a powerful combination. According to the Alzheimer’s Associationmore than 5.3 Million people currently have Alzheimer’s disease. Now add in caregivers, spouses, children, grandchildren, friends, and coworkers that are impacted. Suddenly that number grows much, much larger.

I suspect you have been affected in some way. If not you, then someone you know. There usually aren’t six degrees of separation with Alzheimer’s.

I was one of the forgotten ones. My grandfather had Alzheimer’s. When he died he had forgotten me and everyone else he loved. At the time, as is so typical of the disease, beyond my immediate family I didn’t talk about it with anyone. Why? I’ve asked myself that question a thousand times. Why didn’t I talk? Why didn’t anyone ask? Why weren’t there others sharing their own perspectives, their own stories, to give me hope, or at least a better understanding of what was to come?

Years later, by then a published children’s book author, I found myself compelled to write a story. A story about a young girl who is forgotten. I didn’t set out to write a book about Alzheimer’s. I set out to write a novel inspired by my own truth. 

Many other authors have been inspired to do the same.

For November, National Alzheimer’s Awareness Month and National Caregiver Month, I’ve pulled together a book list of titles for all ages, six for children, six for adults. Get a book for yourself. Get a book as a gift for someone you know. Then talk. Share. Comfort and be comforted. Together we can end the silence of Alzheimer’s. 

Ages 4-8 – Picture books. 

What's Happening to Grandpa?, Maria Shriver
Kate loves her Grandpa’s stories but when he begins repeating them and forgets Kate’s name, she knows something is wrong. As a way to cope, she creates a special photo album of their times together. 

Forget Me Not, Nancy Van Laan
When Julia’s Grandmother begins to forget things and even get lost in her own neighborhood, the whole family knows something is wrong. Eventually they need to move Grandmother out of her home, a place filled with memories, into a place where she’ll be safer. 

Ages 9-13 – Middle-grade novels.

The Graduation of Jake Moon, Barbara Park
Jake Moon and his grandfather, Skelly, are close. Until Skelly is diagnosed with Alzheimer’s. Now the roles are switched. It’s as if Skelly is the kid and Jake is the adult. Much of Skelly’s care falls to Jake, which doesn’t leave much time for being a kid.

What Flowers Remember, Shannon Wiersbitzky
In the small town of Tucker’s Ferry, West Virginia, Delia and Old Red Clancy are friends and business partners. When he is diagnosed with Alzheimer’s, Delia takes it upon herself to save as many of his memories as she can, and she convinces the whole town to help.   

Ages 12-18 – Young Adult novels 

Curveball, Jordan Sonnenblick
Peter Friedman used to be a star baseball pitcher. In the year following an elbow injury, his grandfather is diagnosed with Alzheimer’s. The only bright spot is his new girlfriend and his grandfather’s photography equipment.  

Pop, Gordon Korman
Marcus strikes up a friendship with Charlie Popovich, a former pro football player. As the two become closer, Marcus learns that Charlie has early onset Alzheimer’s as a result of head injuries suffered during his career.

Adult Fiction

Tending Roses, Lisa Wingate
Kate Bowman and her family travel to Missouri with the intent of moving Kate’s increasingly frail and forgetful grandmother to a nursing home. Struggling to find her way, Kate finds her grandmother’s journal and is forced to reexamine her own priorities in life. 

Blue Hydrangeas: an Alzheimer’s love story, Marianne Sciucco
Jack and Sara own a New England bed and breakfast. When Sara is stricken with Alzheimer’s, everyone suggests a care facility. Unable to bear the thought of life without her, Jack makes an impossible promise. They will stay together no matter what the disease brings. 

An Absent Mind, Eric Rill
Saul is a man used to being in control. Then he is diagnosed with Alzheimer’s. Saul and his family know how it has to end, because no one has ever outsmarted Alzheimer’s. But as they journey the unfamiliar path of the disease, they leave behind their once disconnected lives and come together to weather their difficult journey.

Adult Memoir

On Pluto: Inside the Mind of Alzheimer's, Greg O'Brien
OnPluto 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. 

Alzheimer's Daughter, Jean Lee
With wincing honesty, Jean Lee chronicles the journey of understanding and accepting the memory loss of her parents, both of whom were diagnosed with Alzheimer’s on the same day. The story spans nearly a decade of caregiving, documenting frustration, sorrow, love, and ultimately acceptance. 

Somebody Stole My Iron, Vicki Tapia
Vicki Tapia’s mother was diagnosed with Alzheimer’s, followed shortly by a diagnosis of Parkinson’s related dementia for her father. Detailing the daily challenges, turbulent emotions, and painful decisions in caring for her parents, Tapia provides lessons learned for anyone facing Alzheimer’s with their own loved ones. 

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Wednesday, November 25, 2015

Sharing Our Caregiver Stories Helps Others Cope



 
Today's guest blogger is Jean Lee, author of the painful and beautifully written memoir Alzheimer's Daughter. Jean reached out to me via Twitter and introduced herself after reading Blue Hydrangeas. She told me she loved the story and that it reminded her of her years caring for her own parents. She said she’d written her own book and asked if I’d be an advance reader. Of course I said yes. Thus began a lovely friendship and a strong collaboration as authors dedicated to raise awareness of Alzheimer’s disease. She is a driving force in #AlzAuthors Ending the Isolation ofAlzheimer’s, a tireless advocate for caregivers, and a brilliant writer. Today she shares a little of her own story, and how writing her own book helps her help others.  She also shares something about the other #AlzAuthor titles in our collaboration. Jean has been featured on this blog several times. Welcome back to Adventures in Publishing Jean!

Sharing Our Caregiving Stories Helps Others Cope
by Jean L. Lee, author of Alzheimer’s Daughter

Caregivers. We are all caregivers. As humans we care for one another, or we should. Most especially, we care for those close to us.

  • As a youth I loved and respected my parents, a form of caring for them in my child-like way.
  •  As a young wife and mom, I cared for my husband and children.
  • As a teacher, I cared for my students.

But the logical timeline of maturation, love, and respect tipped topsy-turvy when my parents reached their eighties. They slowly began to lose their minds, act irrationally, and I became concerned for their safety. I sought out medical treatment, and they were both diagnosed with Alzheimer’s disease on the same day. 

Over the next decade I became the parent to my parents. I gradually, painfully made decisions, which they opposed in order to protect their well-being. In the process, I felt the guilt of taking everything away from the people had given me everything.

As I struggled to keep the pieces of my life together––my marriage, my own family, my career and the care of my parents––I grasped for resources, but found few. I am a positive person, therefore I sought uplifting resources, but much of what I read was written with a negative undertone about the ill treatment of a caregiver by an unreasonable loved one, about adult siblings who fought, about children who had grown up with angst toward a parent which continued through caregiving years. Even so, every time I found a kernel of truth, I felt as though I could keep going, someone else was brave enough to share this upside down world as well. 

I came to the conclusion that sharing my story might help others.

Alzheimer's Daughter details my journey caring for my parents. It is written with wincing honesty about the cruel effects of the disease, but a WWII love story held together by faith and family is contained within the pages.

Over the past several months, four other authors from across the country and I have crossed paths, all of us affected in some way by Alzheimer’s disease/dementia. 

For the month of November, the five of us have joined together in recognition of National Caregiver Appreciation Month and National Alzheimer’s Disease Awareness Month to recognize those unsung heroes, family caregivers. From each other we learned that all of us felt compelled to write our books, hoping to make a difference…hoping that we might make the pathway of others traveling this road a little less painful and lonely. 

Somebody Stole My Iron, by Vicki Tapia

Vicki details the daily challenges, turbulent emotions, and painful decisions involved in caring for her parents. Laced with humor and pathos, reviewers describe her book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer's/dementia patient's family.” Vicki wrote this story to offer hope to others, to reassure them that they’re not alone.    
 
What Flowers Remember by Shannon Wiersbitzky

Shannon writes this work of fiction through the eyes of a small-town preteen girl, Delia, whose elderly neighbor, Old Red Clancy is failing mentally. The aged gentleman has to be placed in a care facility, but Delia will not let him wither away. She devises a way for the whole community to remind Old Red how important he has been in all of their lives.

On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

Diagnosed with early-onset Alzheimer’s, Greg O’Brien’s story isn’t about losing someone else to Alzheimer’s, it is about losing himself a sliver at a time while still fighting to live with Alzheimer's, not die with it. 

 
Blue Hydrangeas, an Alzheimer’s love story by Marianne Sciucco

A pair of retired Cape Cod innkeepers struggle with the wife’s Alzheimer’s.

For more information about caregiving and caregivers please follow #AlzAuthors during National Caregivers Appreciation Month, November 2015, or find us on Facebook.

You may read my interview with Jean here and my review of Alzheimer’s Daughter here.

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Subscribe here and receive a free PDF of my Kindle short story "Ino's Love."