Tuesday, May 31, 2016

AlzAuthors: Secrets, Stigma, Silence, Reticence

June is Alzheimer's and Brain Awareness Month. Once again I am teamed with AlzAuthors to help raise awareness of this disease. More than five million Americans are living with Alzheimer's and all of them have loved ones and caregivers also affected. It's the sixth leading cause of death in the United States. Every 66 seconds someone develops it. Yet as a society we have difficulty talking about it. Sometimes fear stops the conversation, Sometimes shame. Sometimes grief. AlzAuthors exists to start a conversation about the experiences of those living with dementia. To provide caregivers with knowledge, support, and an outlet to express their own stories. Here we each discuss how secrets, stigma, silence, and/or reticence have affected our own experiences.

Secrets, by Jean Lee

If you have not been a caregiver–if you’re not living with the disease, you may not understand the concept of secrets when dealing with Alzheimer’s. If I had been an observer I would have thought, why would anyone keep a diagnosis a secret?

But, I was not an observer. Alzheimer’s invaded and took over my parents’ lives as well as my own when they were both diagnosed on the same day. I was working full time as an elementary teacher, living in the same small town in which I’d grown up, when I assumed the primary caregiving, decision-making role with my 86-year-old parents. They were small business owners, my father still drove, and they lived independently in their own home.

On the day of their diagnosis my dad struggled to his feet shouting, “How dare you use the A. word with me.” as Mom wagged her finger at the doctor scolding, “Shame on you.”

We came home from that appointment and conversation about the diagnosis stopped, unless I brought it up. They denied, saying they didn’t want anyone to know, to think they were crazy, or start gossip.

To respect the parents who had given me everything, I propped them up, protected them and their dignity, while I felt immense guilt whittling everything away piece by piece: their independence, their driving, forcing my dad to retire, moving them eventually to a locked memory unit.

I did not write, Alzheimer’s Daughter, to come clean, be honest, or tell secrets. Through the journey Isought support by reading about personal experiences. Each time I found a similar situation, I thought, If this person survived, so will I. Keep breathing. One week after my mother’s death, when I realized my father had no memory of her or their 66-year marriage, my secrets could no longer be contained, so I wrote the book I needed to read all along. Reviewers say it is written with wincing honesty about the cruel affects of the disease, but a WWII love story held together by faith and family is contained within the pages.

I see a new openness about the disease, especially in those touched by early onset, through books like Greg O’Brien’s On Pluto, B.Smith and Dad Gasby’s Before I Forget as well as Kimberly Williams Paisley’s Where the Light Gets In. When each of us tell our stories and combine our voices, we form a large pool of collaborators offering resources, support, understanding, and empathy.

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Stigma, by Marianne Sciucco

As a young, naïve, inexperienced nurse in 1990, I accepted a job in a long-term care facility and took
on the task of caring for dozens of patients with Alzheimer’s and dementia. The disease was not new to me. A beloved aunt succumbed to Alzheimer’s, and I experienced the pain of her forgetting me, a niece she loved, and witnessed her decline. However, that personal experience did little to prepare me for the hard work and dedication required to care for the helpless and often forgotten individuals with dementia.

My experience with Alzheimer’s patients and their families continued over the next 17 years, throughout my career as a hospital nurse and case manager. Many times, I encountered families in crisis, when serious decisions had to be made by members often unschooled in the disease and lacking adequate knowledge of available resources.

Outside of my work, few people discussed Alzheimer’s or dementia, and it felt like I spent my days in some sort of warped reality.

As a child, I dreamed I’d someday write a book, and in 2002, I settled down to do so. But I couldn’t come up with a story or characters that inspired me to complete a project. Not until a lovely couple in their 80’s crossed my path one day at work. She was a beautiful woman who had Alzheimer’s. Her husband, though quite frail, was devoted to her. They inspired the characters of Jack and Sara in my novel Blue Hydrangeas, an Alzheimer’s love story.

It took eleven years to finish and publish that book and a lot changed during those years. The US experienced an explosion of Alzheimer’s cases, some 5 million-plus families now affected. When I mention it today, I rarely do so to someone with no familiarity. For example, at a recent writer’s conference, I sat at a table with three other writers, two of them strangers, and all of us revealed we had a loved one with the disease. Scary, isn’t it?

I wrote my novel from the perspective of a health care professional with hundreds of patient interactions behind me. My personal experience grew to three aunts, none of whom I was intimately involved in caring for, nor was I a decision maker in their care.

Flash forward 26 years – a loved one whom I am very close to and responsible for as Health Care Proxy and Power of Attorney was recently diagnosed with mixed dementia: frontotemporal vs. vascular vs. Alzheimer’s.

Suddenly I am thrust into the role of caregiver, the decision maker, the one to whom all others consult regarding doctors, diagnosis, hospitalization, and discharge plans. Caregiver collapse forced him into the hospital. He does not understand why he is there. “I’m not sick,” he says. “I want to go home.” I applied for Medicaid on his behalf. I researched and toured several nursing facilities. He knows nothing about any of this.

I wrote a book about Alzheimer’s and I thought I knew what I was writing about. Many people
affirmed I did. Readers, caregivers, wrote reviews and said I got the story “right,” and the novel is “spot on!” Yet what I knew was just a fraction of what I need to know now to complete this journey. I am tasked with stripping this person of everything he acquired in his life, of finding him a safe place where he will be cared for the rest of his days. The frustration, confusion, and exhaustion are overwhelming. There are days of tears, sleepless nights, and feelings of hopelessness and inadequacy. Sometimes I just want to run away. I want to get back to my “real” life. But once dementia hits, there’s no going back. We can only push on, praying we make the right choices, the proper decisions. It’s a long trip without a road map.

A lot has changed since that wide-eyed young nurse walked into that nursing home and encountered Alzheimer’s care for the first time. As millions of baby boomers enter their retirement years, dementia is at the forefront of a national discussion on healthcare, aging, and resources. Most people are familiar with these diseases, but misconceptions and inaccuracies about signs and symptoms, treatment, research, and its future remain. Shame and stigma still surround it. Caregivers and loved ones are often reluctant to reveal a diagnosis, keeping it secret. Losing one’s mind, forgetting yourself and those you love, is a subject best left in silence.

As a #AlzAuthor, I am an active advocate for Alzheimer’s patients, their caregivers, and their families. I believe in opening dialogues, and sharing stories and solutions. In spite of this, I am not willing to reveal the name of my loved one in public. This is another way to protect him, to preserve his privacy and dignity. I may be responsible for him, but I don’t believe I have the right to disclose his “secret,” a secret he does not understand. I am here to help, not hurt. Invading his privacy at this stage helps no one, and may hurt him.

Much work must be done before we can speak of Alzheimer’s and dementia freely, without stigma, without secrets. Silence and shame, even for good reasons, cannot be acceptable.

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Silence is Not Golden When it Comes to Alzheimer’s, by Shannon Weirsbitzky

Silence is golden. We’ve all heard that phrase. In the midst of a world that is loud and hard to
understand at times, we often crave silence. Whether at home or at the beach with only the sound of the waves as company. Perhaps at a spa or in the woods, walking along a tree-lined path.

There are times though when silence isn’t golden. This is particularly true with Alzheimer’s. Too often, as it steals memories, it also steals voices. There is a certain stigma with the disease. As if there is shame in forgetting, or being forgotten.

Poet and teacher Clint Smith said something in a TED talk that resonated with me in a profound way. “We spend so much time listening to things people are saying that we rarely pay attention to the things they don’t.” I wrote it down. I replayed his words. I read them out loud to myself. Each time, I could hear the message thrum in my heart.

When he spoke, Mr. Smith was referencing ignorance and injustice, but for me, the statement is equally applicable for Alzheimer’s. It is a disease that is spoken about in hushed tones if it is spoken about at all. I’ve heard too many stories of families who told no one about a diagnosis.

When I wrote WHAT FLOWERS REMEMBER, I was shocked to learn that it was one of only a
handful of novels for children ages nine to thirteen that dealt with Alzheimer’s. Even more surprising were the conversations I began having with friends. 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.

People I’d known for years suddenly spoke up, sharing their experiences with the disease. We traded stories, and fears, funny moments and terrible endings. But why hadn’t we talked about it earlier? When we might have helped each other cope?

I’m not sure.

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. 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 be the month we begin to share. Let’s start creating that new language. Together, our voices can stamp out the stigma of Alzheimer’s. Shout it from the rooftops. Sing from the rafters. Talk with those you know. Someone will thank you for it. And you may find yourself healing too.

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Reticence, by Vicki Tapia

An unexplained inner drive compelled me to document a multi-year sojourn that I took with my
parents. It was the last journey we took together…a journey down the rabbit hole of dementia. Within months of each other, Dad received a diagnosis of Parkinson’s-related dementia and shortly thereafter, Mom, with Alzheimer’s disease. During the first year, I began a diary to record our odyssey. Journaling every evening helped me unwind and release some of the turbulent emotions involved with the day-to-day challenges we faced. This journal became my confidante to whom I could “say” anything without fear of reprisal and it asked for nothing in return. It simply listened.

As time passed, an idea quietly germinated in my subconscious, leading to a growing awareness that my experience might be helpful to others walking the same road. With that realization, my diary morphed into a manuscript and I began to consider pursuing publication. With a bit of wariness, I shared the manuscript with a few close friends, who offered positive feedback and encouragement. Then something unexpected happened. I developed a severe case of reticence. How could I expose our family to the public’s scrutiny, unveiling all the foibles and missteps? How could I expose the frightful truth about Mom’s precipitous decline? Even worse, if I moved forward with publication, I risked alienating my only sibling and perhaps his family, in my honesty about his lack of involvement and emotional support. When my best friend from childhood intimated that I would be “dishonoring” my parents if I were audacious enough to seek publication, her comment completely knocked the wind out of my sails. That did it. I chastised myself for even considering unmasking our family in such a callous way. The story was simply too private and I certainly did not want to dishonor my parents’ memory in any way, shape or form.

The manuscript languished on my computer hard drive for nearly 3 years. A tiny inner voice,
however, refused to leave me alone. Now and then, it spoke to me, in various iterations: This narrative might be able to offer hope to others! Or: You know you learned a lot of lessons along the way that might help others from making the same mistakes. Why won’t you share them? Or: This story has so many ideas for coping, plus you could add information from experts to make it even more useful. Or: What if you lightened another’s load, letting them know that they’re not alone on a difficult road?

Eventually, I could no longer deny that voice, so I listened. I moved forward with editing, found a publisher and shared my story. Nine long years after I began my diary to cope, my diary of hope, Somebody Stole My Iron: A Family Memoir of Dementia was born.

Let’s not keep secrets any longer. Join us during June, Alzheimer’s and Brain Awareness Month. Speak out.

Monday, May 30, 2016

AlzAuthors Spotlights Writers on Alzheimer's and Dementia in June, Alz and Brain Awareness Month


We are AlzAuthors, four daughters who have experienced the pain and loss of a loved one with Alzheimer's disease or dementia. We know the pain of being forgotten. We have all witnessed decline. Most of us have provided countless hours of caregiving.

We chose to write about our personal and painful dementia stories to help others who may be on their own journeys. Our stories can serve as guides to the disease process, a caregiver's handbook, or simply the catalyst to much needed conversations among families.

Although we haven't met personally, we found each other through our books and became friends. Together we advocate for those with dementia and their families, providing education and awareness of a disease projected to affect 131 million people worldwide by 2050.

One year ago, we formed a collaboration to pool our talents, skills, and resources to raise awareness during June, Alzheimer's and Brain Awareness Month. This campaign resulted in exposure across dozens of Alzheimer's and dementia websites, blogs and social media, #AlzAuthors. We also held a Facebook event that has grown into a Facebook group.

We have come together again to continue our mission to educate and enlighten. On June 1st we are launching a new blog, AlzAuthors, a space where those writing about Alzheimer's and dementia can share their stories. Throughout the month we will feature a different author each day who will share what motivates him or her to write about Alzheimer's and dementia. Our goal is to increase exposure of their books and blogs, and to enable caregivers to discover resources that may help them get through their challenging times.

Our blog is also an opportunity for caregivers and others to share their stories. Let's start a conversation!

Follow us on AlzAuthors blog, our AlzAuthors Facebook group, and #AlzAuthors on Twitter. Please share your stories. We're waiting to hear from you.

AlzAuthors is:


Jean Lee, author of Alzheimer's Daughter, cared for her mother and father, both diagnosed with Alzheimer's on the same day. "I wrote the book I needed to read while caregiving for my parents," she says. Jean lived only one mile from them, and her only sibling, a sister, lived 1,000 miles away. "She suggested I keep a journal of things that concerned me about our parents’ health and safety," Jean says. "The journal allowed us to be proactive rather than react to a crisis. I only shared my parents’ illness with a handful of friends and coworkers. I remember them telling me I should write a book about this dual decline. I was too busy trying to stay afloat to give any thought to writing about the experience, except in my sister-journal. However, less than one week after my mother died, while visiting with my dad, I saw he had no memory of Mom or their 66-year marriage. I was stunned, and at that point came to believe my journal could become the core of a book honoring my parents’ love story and documenting their simultaneous decline." Her memoir Alzheimer's Daughter is a beautiful but poignant tribute to her parents and a source of support for caregivers.

Vicki Tapia also cared for both parents. Her mother had Alzheimer's and her father had Parkinson's- related dementia. Vicki chronicled the days she spent with her parents caring for them in their home and then throughout assisted living facilities and nursing homes until their deaths. These diaries became the foundation of her book, Somebody Stole My Iron: A Family Memoir of Dementia. Filled with personal lessons learned along the way, ideas and tips for managing the day-to-day difficulties of dementia, and useful information from experts within the field of Alzheimer’s research, this memoir is a must read for caregivers. "While I cannot tell you it was easy or even pleasant traveling down that rabbit hole of dementia," Vicki says, "for me it was a time of personal growth, as we maneuvered through the disease’s many challenges. Interspersed with those challenges were moments of tenderness and brief, fleeting times of lucidity in one or the other parent that I still cherish. I learned to parent my parents with patience and compassion; caring for them, much as they’d cared for me as a child, so many years ago."

Shannon Wiersbitzky witnessed the decline of her beloved grandfather from Alzheimer's when she was just a child. "I spent my childhood summers with my grandparents in a small town in West Virginia, not totally unlike the fictional town of Tucker’s Ferry in my book," she says. "As a result, my grandparents became like second parents. When I was in my twenties, my grandfather was diagnosed with Alzheimer’s. I hoped and prayed that he wouldn’t forget me. But of course, the disease doesn’t work that way, and I was forgotten along with everyone else he loved. The moment I realized he no longer knew who I was is something I will never forget. It broke my heart. And it was that nugget which inspired my novel, What Flowers Remember." In the drama of Alzheimer's, children are often overlooked, their observations and points of view neglected. What Flowers Remember helps open a discussion with young people about what's happening with Grandma or Grandpa. It is a heartwarming story of love and loss, of a young girl coming to understand that even when people die, they live on in our minds, our hearts, and our stories.

I am a registered nurse who has assisted hundreds of families on their dementia journeys and watched three aunts succumb to the disease. I recently became the caregiver to a family member newly diagnosed with mixed dementia. My novel, Blue Hydrangeas, an Alzheimer's love story, is based on many couples I worked with, one in particular. As a nurse, I'm the keeper of many stories, which really are about the human experience, and because I write and have those skills, and I desire to do so, I feel I have an obligation to tell these stories. It's ironic I am now living out a dementia story of my own. Alzheimer's is always on my radar, but I did not expect this person to be the one. Suddenly, I'm the one with all the answers, all the responsibility. It's overwhelming. The wealth of knowledge I have gained from my years as a nurse and writing about it keeps me sane.

These are our stories. Are you an AlzAuthor? Please share your stories in this space, in our AlzAuthors Facebook Group, or on Twitter with #AlzAuthors And sign up for updates to follow the authors featured on our blog.

Sunday, May 15, 2016

New Release Spotlight: "My Last Love Story"

 
Today's New Release spotlight is the fourth novel from bestselling author Falguni Kothari. Enter to win a copy at the end of the post.

Perfect for fans of Jojo Moyes’s, Me Before You, My Last Love Story is a heartbreaking romantic tale about the complexities of trauma and whether love can right a wrong.

I, Simeen Desai, am tired of making lemonade with the lemons life has handed me.

Love is meant to heal wounds.
Love was meant to make my world sparkle and spin.
Love has ripped my life apart and shattered my soul.

I love my husband, and he loves me.
But Nirvaan is dying.
I love my husband. I want to make him happy.
But he is asking for the impossible.

I don’t want a baby.
I don’t want to make nice with Zayaan.
I don’t want another chance at another love story.




 
Book Links: Goodreads * Amazon US * Amazon IN

Advance Praise:

At once heartbreaking, delightful and completely unexpected. A must read! ~ Sonali Dev, author of The Bollywood Affair

In My Last Love Story, Kothari examines love and loss, desire and desolation, with a deft, wry touch that kept me reading late into the night and moved me to tears. ~ Julia Tagan, author of Stages of Desire

About the Author:


Falguni Kothari is an internationally bestselling hybrid author and an amateur Latin and Ballroom dance silver medalist with a background in Indian Classical dance. She writes in a variety of genres sewn together by the colorful threads of her South Asian heritage and expat experiences. When not writing or dancing, she fools around on all manner of social media, and loves to connect with her readers. My Last Love Story is her fourth novel.

Contact the Author:
Website * Blog * Twitter * Facebook * Goodreads * Pinterest


Giveaway Details: One copy of My Last Love Story by Falguni Kothari in paperback for US or Indian Resident winner; eBook for other international winner.

Enter now!

Friday, May 6, 2016

New Release Spotlight: The Gladiator and the Guard

Today's guest is fellow Clean Indie Reads author Annie Douglass Lima. Annie writes young adult action and adventure novels. Her latest, The Gladiator and the Guard, is now available on Amazon and Smashwords. This is the second book in the Krillonian Chronicles, sequel to The Collar and the Cavvarach. Read through to find the Rafflecopter to win a $10 Amazon giftcard.

First Things First: a Little Information about Book 1: 

Bensin, a teenage slave and martial artist, is desperate to see his little sister freed. But only victory in the Krillonian Empire's most prestigious tournament will allow him to secretly arrange for Ellie's escape. Dangerous people are closing in on her, however, and Bensin is running out of time.  With his one hope fading quickly away, how can Bensin save Ellie from a life of slavery and abuse?

What is the Collar for, and What is a Cavvarach?
The story is set in a world very much like our own, with just a few major differences. One is that slavery is legal there. Slaves must wear metal collars that lock around their neck, making their enslaved status obvious to everyone. Any slave attempting to escape faces the dilemma of how and where to illegally get their collar removed (a crime punishable by enslavement for the remover). Another difference is the popularity of a martial art called cavvara shil. It is fought with a cavvarach (rhymes with "have a rack"), a weapon similar to a sword but with a steel hook protruding from partway down its top edge. Competitors can strike at each other with their feet as well as with the blades. You win in one of two ways: disarming your opponent (hooking or knocking their cavvarach out of their hands) or pinning their shoulders to the mat for five seconds.

Click here to order The Collar and the Cavvarach from Amazon for a discounted price of just 0.99 cents through May 30. Regularly 2.99. 

And now, The Gladiator and the Guard, with another awesome cover by the talented Jack Lin!

Bensin is just one victory away from freedom. But after he is accused of a crime he didn’t commit, he is condemned to the violent life and early death of a gladiator. While his loved ones seek desperately for a way to rescue him, Bensin struggles to stay alive and forge an identity in an environment designed to strip it from him. When he infuriates the authorities with his choices, he knows he is running out of time. Can he stand against the cruelty of the arena system and seize his freedom before that system crushes him?

Click here to order The Gladiator and the Guard in Kindle format from Amazon for a discounted price of just 0.99 cents through May 30. Regularly 2.99.

Click here to order The Gladiator and the Guard from Smashwords (for Nook or in other digital formats) for a discounted price of just 0.99 cents through May 30. Regularly 2.99.
 
About the Author

Annie Douglass Lima spent most of her childhood in Kenya and later graduated from Biola University in Southern California. She and her husband Floyd currently live in Taiwan, where she teaches fifth grade at Morrison Academy. She has been writing poetry, short stories, and novels since her childhood, and to date has published twelve books (two YA action and adventure novels, four fantasies, a puppet script, and five anthologies of her students’ poetry). Besides writing, her hobbies include reading (especially fantasy and science fiction), scrapbooking, and international travel.

 
Connect with Annie Douglass Lima
Email: AnnieDouglassLima@gmail.com
Blog 

Now, enter to win an Amazon gift card or a free digital copy of The Collar and the Cavvarach! a Rafflecopter giveaway

Wednesday, May 4, 2016

New Release: Olympic Swim Film "Touch the Wall"

Once again I veer away from my mission to promote self publishing, indie authors, and their books to spotlight something different. As I prepare to publish my epic swim novel Swim Season, I plan to take a break to watch this documentary about two swimmers as they prepare for the 2012 London Olympics. One is a veteran at these events and the other is a first-timer. After a successful nation-wide theatrical run, the beloved swim film Touch the Wall is now available on iTunes, Amazon, and other digital platforms. Grab it and watch! I'm waiting for my own champion swimmer to come home from school for the summer so we can watch it together.

Touch the Wall, by Grant Barbeito & Christo Brock, stars the teen-aged Missy Franklin as she prepared for her triumphant first Olympics. The film details her relationship with multiple Olympic Medalist Kara Lynn Joyce, a seasoned pro who came to swim with Missy in the altitude of Denver in 2011. At those 2012 games, Missy won 4 gold medals and broke two world records.


Watch the film trailer:


Since the film’s release, the two women have taken different paths. Kara retired after London, and continues in the swim world as a teacher and coach. Missy returned to school and swam collegiately at Berkeley for two years. She passed up millions in endorsement income to swim on a college team, and that choice paid off in 2015 when Berkeley won the NCAA division I female swimming championship.

Missy turned professional after that championship, and returned home to Denver, Colorado to train with her former coach Todd Schmitz. Armed with a sizzling smile and a keen intellect, she’s one of the world’s most sought-after pitchwomen, and endorses Visa, Wheaties, Speedo, Minute-Maid, and GoPro.

The Missy Franklin/Kara Lynn Joyce film has screened more than 500 times in the last 18 months to swim clubs, women’s groups, and Olympic fans across the country. And though DVDs have been available since September, the film just came to digital. Accompanying the digital release on iTunes are four Extra Movies – short behind-the- scenes movies of Missy and Kara talking about their experiences in the film. Those movies are a smaller part of the larger Special Edition due out later this year.

Get it on iTunes!


Reviews

“Unintentionally revolutionary​ in its celebration of female physical and emotional strength​.​ ”
 – The Mary Sue

“A unique lesson in the dance between competition and collaboration​."
 – ​ The Denver Post