From the AlzAuthors Blog: Wendy Mitchell Writes about Living With Young Onset Dementia

by Wendy Mitchell

Imagine yourself being given a diagnosis of Young Onset Dementia. Your life falls apart, you feel worthless, and of no use to anyone any more. Services are nonexistent, so you feel abandoned.

That’s what happened to me in July 2014, when I was diagnosed with young onset dementia at the age of 58, and still working full-time in the NHS. I retired at the age of 59, due to ill health, thinking there was no alternative. Then I sat waiting for services to kick in, but, of course, nothing happened. There were no services.

I could have given up and gone into a deep state of depression, but I knew there must be more. We all had talents before a diagnosis of dementia; we don’t suddenly lose all those talents overnight when we get a diagnosis.

Beyond Still Alice: 5 Alzheimer's Books You May Have Missed

What do you know about Alzheimer’s? Anything? What should you know about Alzheimer’s? Something.

This is not just our parents’ disease. It’s a problem that has far-reaching complications, not only wreaking havoc in the life of the one afflicted, but in the lives of all those surrounding him or her: spouse, children, grandchildren, siblings, friends, caregivers, and the greater community. Its impact is exponential: For each one of the 5.3 million Americans diagnosed with Alzheimer’s, there are another 5.3 million (at the very least) affected (see Alz.org). These people are our families, neighbors, co-workers, friends, and acquaintances. As our lives intersect and intertwine, this disease affects all of us.

June is Alzheimer’s and Brain Awareness Month. Take some time to learn more about this illness, to understand what it means to those who love someone afflicted, to those who dedicate themselves to see that they are cared for, and ensure that their lives continue to have meaning and dignity.

There are many ways to become educated about a condition or disease. With Alzheimer’s, there are hundreds of books available to explain it, advise what to do about it, how to handle it, and offer solutions and support for caregivers. These are excellent resources.

However, stories that enlighten through the careful balance of useful facts and a cast of relatable and realistic characters may be a better way to shed light on this and many other medical issues. This type of presentation enables the reader to get inside the head of the Alzheimer’s patient, their caregivers, spouse, children, and other loved ones. It’s up close and personal, not clinical and removed.

Here are five titles to get you started. Three are memoirs, two are novels. Two are written by women who did double duty at the same time, caring for both mother and father as they suffered from dementia and Alzheimer’s. Another is the story of a woman healing her relationship with her mother after an Alzheimer’s diagnosis. One is written by a novelist wanting to pay tribute to those who rise to the difficult challenge of serving as caregiver to a loved one with this disease. One is written by a nurse who worked with hundreds of Alzheimer’s patient and their families.

Alzheimer’s is a frightening possibility, but to meet it without knowledge or an understanding of its implications increases despair and hopelessness and strips one of the power to make competent decisions and access necessary supports and resources. Knowledge gained through literature can be as practical and useful as any self-help or how-to manual.

Jean Lee, Alzheimer’s Daughter, a memoir

"I wrote what I needed to read as I traveled through the caregiving journey."

What would you do if both parents were diagnosed?

At the time of their diagnosis, Ed Church struggles to his feet, yelling, “How dare you use the A. word with me,” while Ibby wags her finger at the doctor scolding, “Shame on you.”

They defend each other, Ibby by asserting, “We’re not leaving our home,” and Ed reassuring, “We’re just fine.”

About his driving Ed states, “I’m an excellent driver, I’ve never had an accident.”

After Rosie moves them to assisted living, convinced they are on a second honeymoon, they break the news, “We’ve decided not to have more children.”

In the late stages, they politely shake Rosie’s hand, inquiring, “Now, who are you?”

In Alzheimer’s Daughter readers journey with the author from her first suspicions that something is awry to a decade later as she is honored to hold Ed and Ibby’s hands as they draw their last breaths.

Available on Amazon in paperback and Kindle

Visit Jean’s Author Page and blog

Vicki Tapia, Somebody Stole My Iron, A Family Memoir of Dementia

“I wrote my story to offer hope to others whose lives have been intimately affected by this dreadful disease, to reassure them that they’re not alone.”

How would you cope if your loved one’s mind gradually slipped away?

                    

Navigating the waters of dementia can be frightening, unleashing a myriad of emotions for everyone involved, precipitating anxiety and grief, anger and frustration, extreme sadness and feelings of hopelessness.  After Vicki Tapia’s mother was diagnosed with Alzheimer's disease, followed closely by her father with Parkinson’s disease-related dementia, she struggled to find practical, helpful information to light her way.  Somebody Stole My Iron began as a diary to help her cope but emerged as a road map for others.  It offers a glimpse into her family's life as they rode the waves of dementia, sometimes sailing, other times capsizing.  This engaging memoir offers useful information from experts in the field of Alzheimer's research, personal lessons the author learned along the way, and ideas/tips for managing the day-to-day ups and downs of dementia.

Somebody Stole My Iron chronicles the tenacity of Vicki’s mother as she fought her way through the tangled and bewildering labyrinth called dementia.  Above all, it is a story of holding on and ultimately learning to let go, transcending the pain and turmoil to discover both an abiding love and a tender compassion.

Available on Amazon, Barnes & Noble, and Praeclarus Press

Visit Vicki’s Author Page, website, and blog

Maria Hoagland, Still Time, a novel

“Medical and family drama are intriguing to me, but it wasn't the unusual that grabbed my attention for this book. I wanted to spotlight the stalwart courage and strong character that are revealed when someone has to rise to a difficult challenge. I believe we all have it in us to confront our trials, face them head-on, and gracefully endure, and what better way to show that than a mother and caregiver who sacrifices her all for someone she loves?”

Thrust into the chaos of her mother-in-law’s hoarding and forgetfulness, LDS church member Alyssa Johnston wishes she could retreat to a simpler time when her kids were small and almost anything could be fixed with a hug. But reassurance and a quick distraction no longer erase the pain of a missionary son who is struggling, a young teen who is bullied, or a daughter who is distant. As Aly’s own life and relationship with her husband plunge out of control, she wonders if her faith will be enough to keep her family—or herself—from falling apart. Still Time is a deeply moving story about a woman’s faithful journey into the next phase of her life. You will laugh with Aly, feel her sorrow, and see yourself in Maria Hoagland’s realistic, heartfelt portrayal of a woman’s struggle to keep her family safe and hold back time as long as she can.

Available on Amazon, Barnes & Noble, iBooks, and Kobo

Visit Maria’s Author Page and blog

Lisa Hirsch, My Mom My Hero, a memoir

“My mother touched me greatly after she showed signs of Alzheimer's. As a long distance caregiver, speaking to her every day, I found myself falling in love with her. I wrote down everything she said so I would never forget it. This is now my book, My Mom My Hero.”

When Lisa found out her mother, Ruth, had been diagnosed with Alzheimer’s disease, her love, appreciation, and caring for her mother was transformed. My Mom My Hero tells the story of this loving mother-daughter relationship. This is an uplifting and inspirational book for anyone going through the difficult and often lonely ordeal of caring for a loved one who suffers from this devastating illness.

Available on Amazon

Visit Lisa’s Author Page and blog

Marianne Sciucco, Blue Hydrangeas, an Alzheimer’s love story, a novel

“This is a story I wrote from the heart after witnessing the pain and heartbreak of many couples and families struggling with Alzheimer's disease.  The characters are loosely based on one couple I met in my work as a registered nurse. Blue Hydrangeas is my attempt to bring consolation and understanding to all who encounter Alzheimer's.”

What if the person who knew you best and loved you most forgot your face, and couldn't remember your name? 

A nursing facility is everyone's solution for what to do about Sara, but her husband, Jack, can't bear to live without her. He is committed to saving his marriage, his wife, and their life together from the devastation of Alzheimer's disease. He and Sara retired years ago to the house of their dreams and operated it as a Cape Cod bed and breakfast named Blue Hydrangeas. 

Jack has made an impossible promise: He and Sara will stay together in their beautiful home no matter what the disease brings. However, after nine years of selfless caregiving, complicated by her progressing Alzheimer's and his own failing heart, he finally admits he can no longer care for her at home.  With reluctance, he arranges to admit her to an assisted living facility. But, on the day of admission, Sara is having one of her few good days, and he is unable to follow through. Instead, he takes them on an impulsive journey to confront their past and reclaim their future. In the end, he realizes that staying together at any cost is what truly matters.

Available on Audible, Amazon, Barnes and Noble, iBooks, Kobo, Smashwords

Visit Marianne’s Author Page and website

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June is Alzheimer's and Brain Awareness Month! Goodreads Giveaway: One Paperback of Blue Hydrangeas, an Alzheimer's Love Story

Goodreads Book Giveaway

Blue Hydrangeas

by Marianne Sciucco

Giveaway ends June 30, 2015.
See the giveaway details at Goodreads.

Enter to Win


"Read it twice just to make sure I didn't miss anything." - Amazon reader

What if the person who knew you best and loved you most forgot your face, and couldn't remember your

name?  

A nursing facility is everyone's solution for what to do about Sara, but her husband, Jack, can't bear to live without her. He is committed to saving his marriage, his wife, and their life together from the devastation of Alzheimer's disease. He and Sara retired years ago to the house of their dreams, and operated it as a Cape Cod bed and breakfast named Blue Hydrangeas.  

Jack has made an impossible promise: He and Sara will stay together in their beautiful home no matter what the disease brings. However, after nine years of selfless caregiving, complicated by her progressing Alzheimer's and his own failing heart, he finally admits he can no longer care for her at home.  

With reluctance, he arranges to admit her to an assisted living facility. But, on the day of admission, Sara is having one of her few good days, and he is unable to follow through. Instead, he takes them on an impulsive journey to confront their past and reclaim their future. In the end, he realizes that staying together at any cost is what truly matters.

A Library Journal Self-e Selection

IndieReader Approved

IndieRecon Best Indie Novel, 2014

5-Star Reader's Favorite

Kindle Bestseller

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

Guest Author: Judith Lucci, Creator of Author 911, an Online Resource For Writers Writing Medical Scenes

Today’s guest is Judith Lucci, creator and administrator of Author 911: The Authors’ Writing & Medical Academy, an online resource for writing medical scenes. Judith brings a wealth of knowledge and decades of experience to this website. She’s a registered nurse and has worked in the ICU, ER, neurology, medical & surgery, home health, and public health nursing. She’s also a professor of nursing at a large university in the South and holds graduate and doctoral degrees from Virginia Commonwealth University and the University of Virginia. Judith has authored textbooks, research studies, theoretical articles, policies and just about anything needed in a clinical or educational environment. She is also the author of the Alex Destephano Medical Thriller Series, which currently includes three titles: Chaos at Crescent City Medical Center, The Imposter, and Viral Intent. Welcome to Adventures in Publishing, Judith! Please tell us about Author 911.

Thanks for inviting me to speak to your readers, Marianne. Author 911: The Authors & Writers’ Medical Academy is my latest project to help authors write medical scenes correctly. The site includes interviews with experts in a variety of areas in healthcare and medicine, links to educational websites on the workings of the human body, a tutorial on ballistics and gunshots, and information on poisons and fight scenes. There’s also writing tips and author spotlights. It’s all new and under development and I hope it allows writers to create believable, realistic stories.

Your Alex Destephano medical series has gotten outstanding reviews. Please tell us about them.

My Alex Destephano novels are a compilation of my very active imagination, my years as a clinical nurse, and current events in the news.  The main characters are Alexandra Destephano, a nurse attorney who is legal counsel for Crescent City Medical Center, and Jack Francoise, a dedicated, gnarly, unyielding New Orleans police commander who covers the 8th Precinct and the French Quarter, where in the deepest, sleazy and sordid areas copious crime occurs. Add in dashing surgeon Robert Bonnet, Alex's ex-husband, and psychiatrist Monique Desmonde, her best friend, and the cast is complete. Crescent City Medical is intent on offering the best care in the world but is constantly challenged by competition, health care reform, incompetent management, psychopaths, murder and viral disease outbreaks, not to mention bad guys intent on doing the hospital harm. Chaos at Crescent City Medical Center, The Imposter, Viral Intent and Toxic New Year (release date Winter 2015) are fast-paced, riveting medical thrillers that offer readers believable drama and memorable characters and allows them to escape into the complex, often mysterious world of health care. 

What are your goals as a writer?

I have three goals when I write: to engage the reader to keep them reading, to entertain the reader and to educate them. I have been a college professor and clinician for many years, and each of my books has underlying themes. In Chaos I talk about the changes in health care based on the Affordable Care Act. The Imposter highlights the dismal state of psychiatric medicine in the US. Viral Intent highlights ethical and political issues currently in society.

 

What is the time span in your novel?

Chaos takes place over a week, The Imposter a week as well, and Viral Intent only four days. Toxic New Year spans several months.

How much research goes into your writing?

There is a ton of research in all of my books. I know a lot about medicine and health care but not so much about explosives, AK47s, drones and counterterrorism.

When, why, and how did you start writing?

I have been writing ever since I can remember. For many years, as an academician I wrote research reports, theoretical articles, and textbooks, and I only returned to fiction writing in recent years.  I love writing…It allows me to continue to teach and educate my readers as well as entertain them.   Writing allows me a ‘work through’ and rights the wrongs that I have experienced in clinical practice.

What inspires you?

I am inspired by my readers. There is nothing more exciting for me than to receive an email from one of them or a great review.  They energize me and propel me forward.

Where do you get your ideas?

My plot lines come from copious research, my experience, a TV show, the newspaper, almost everywhere.  An ongoing plot line in all of my novels came from the New Orleans Police Department website for unsolved crimes.

How much do you read? Which genres?    

                     

I read incessantly. I love thrillers, literary fiction, suspense, historical fiction, just about everything.  I am amazed by people who say to me “I never read.  I don’t have any time.”  I have learned about people and the world by reading. I cannot imagine a life without books.

Can you tell us what you’re working on now?

I am currently working on the fourth Alex book, Toxic New Year, which I hope to release in a few months. I also have another series, Michaela McPherson, Private Eye.  Mic is a retired homicide detective in Richmond, VA who, no matter how hard she tries,  cannot retire. These will be shorter books but just as exciting as the Alex series.

What advice do you have for beginning authors?

My advice would be to read, revise, write, read, revise, write, revise and get a great editor.  It is impossible for many authors, myself included, to edit ourselves and find simple errors that don’t stand out to us.

Thank you, Judith. Best wishes on Author 911 and your medical series.

Judith loves to connect with readers. You can visit her blog or contact her via email at  judithlucciwrites@gmail.com. Follow her on Facebook, Twitter, and her new website Author911.

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