From the AlzAuthors Blog: Michelle Spray Writes About Her Novel “Lost Memories Found Hope: A Granddaughter’s Story of Love throughout Alzheimer’s”

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By Michelle Spray

I truly feel honored to be included as an integral part of the AlzAuthors group. Not only have I written a book with will make my grandmother proud, I have lived the caregiving experience one hundred percent. I was Grandma’s primary caregiver for seven years and got my on-the-job training simply because I lived there. It was up to me. I learned how to cope, distract, exercise patience, and lean on hope to get through all the emotions of dementia and eventually an Alzheimer’s diagnosis. I understand the stress that families are going through, including worrying and grieving for the Grandma I knew even though she was still alive. The day she no longer recognized me is a moment that will forever be etched on my heart.

Lost Memories front cover 2018I didn’t want to write a sad book about Alzheimer’s because that had already been done, so I used the opportunity to write a fictional story based on Grandma’s Alzheimer’s. I included the funny things she’d say, or how sometimes, even in the midst of it all, she would have a quick reply or joke, that always took me by surprise. At the end of the day, it would be these funny moments that helped me through all times I felt like crying; waiting for the mailman who already came, having her accuse me of stealing her teeth, telling me that the golden years weren’t really golden but instead a little rusty. When I’d ask her how she was feeling, she would tap the table and say, “with my hands.” Oh, how I miss her.

An important thing to note during the book is that I (or Jillian, the granddaughter in this novella) tried to do it all myself until I almost broke. So one thing I can’t stress enough to caregivers is to get help early. Take help when offered, ask for help, set appointments for someone else to take over so you can have a break and leave the house without worrying. Even small moments of respite can do wonders. Don’t be afraid to ask for help. It doesn’t make you incapable, it can only help you be a better caregiver.

All of my reviewers agree that Grandma would be proud of the work I’ve done with this book, bringing her story and memories to life. The overall consensus is that I’ve been able to reflect hope out of difficult moments while always remaining true to Grandma’s personality, love, and feistiness. She was a true pillar in my life. I stepped up when she needed me without question just as she had done for me. For that, I am truly grateful and proud.

This book is dedicated to all those in the thick of their own Alzheimer’s journey. Stay hopeful, ask for help, and keep a journal which may very well be the next AlzAuthors book to help end the stigma of Alzheimer’s.

Purchase “Lost Memories Found Hope: A Granddaughter’s Story of Love throughout Alzheimer’s”

 

About the Author

my profile picMichelle Spray is an additional needs mom living in Connecticut. She’s proud to supply an underlying theme of hope and inspiration in all of her books.

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For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. Reposted with permission of AlzAuthors, the global community of authors and readers whose lives have been touched by Alzheimer’s and dementia.

From the AlzAuthors Blog: Carol B. Amos Shares “H.O.P.E. for the Alzheimer’s Journey”

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By Carol B. Amos

My two brothers and I were devastated when our mother began displaying signs of Alzheimer’s disease in 2002. She lived alone in her home and her nearest adult child lived four hours away. We banded together to face this challenge head-on. We began a period of observing, investigating, collaborating, and careful listening to gain insight into the situation. We visited and called our mother more often. We each solicited advice from caregivers we knew and visited our local Alzheimer’s Association office.

My brothers and I worked hard to help our mother maintain her independence and remain in her home. We worked with her doctors, and after multiple attempts Aricept was prescribed. We hired a social worker and nurse to assist her. When “issues” arose, we never knew if an event occurred as she explained. This was extremely frustrating to us. Eventually a dangerous incident demonstrated that she could no longer live alone. It was difficult taking responsibility for our strong, independent mother.

I learned about Alzheimer’s disease through reading, attending workshops, observing caregivers, and from on-the-job training. I have learned from my successes and my failures during this eleven-year period. I have shared my learning, experience, and encouragement with friends, family, and colleagues as they embarked on their journey. I found that a little information made a big difference in their caregiving, so I wrote the book “H.O.P.E. for the Alzheimer’s Journey.” Help, organization, preparation, and education can make the Alzheimer’s journey less stressful and more rewarding.

Final Approved Cover copy“H.O.P.E. for the Alzheimer’s Journey” equips caregivers for their journey. The book is a combination of structured information, insights, and personal narratives to demonstrate the concepts. The concepts are conveyed in an open, honest, and creative manner using original family email communications. These emails provide insight into our thoughts, concerns, emotions, and deliberations as we realized our mother’s memory loss, sought a diagnosis and treatment, selected housing options, and developed care strategies as our mother continued to deteriorate. The book introduces The Caregiving Principle™, a simple and novel approach that provides a deeper understanding of the person with Alzheimer’s and a framework for the caregiver’s role. The Caregiving Principle™ states that the amount and type of caregiving required is directly related to the needs and capability of the person requiring care. In other words:

“Needs of the Person” – “Needs Filled by the Person” = “Needs to be Filled by the Caregiver(s)

Simply put, if a person has needs and cannot provide for all of their own needs then someone else must provide those needs. The “someone else” is a caregiver. The principle utilizes a holistic approach by using Abraham Maslow’s Hierarchy of Needs to define a person’s needs. Maslow’s Hierarchy of Needs increased my understanding of my mother.

“H.O.P.E. for the Alzheimer’s Journey” has been a blessing to many caregivers since the pre-release in May 2018. My ultimate goal is for the book to become obsolete. I am actively involved with fundraising and advocacy efforts to increase research so that a cure is found for Alzheimer’s disease.

Purchase H.O.P.E for the Alzheimer’s Journey

About the Author

Carol B. Amos started her Alzheimer’s journey when her mother started having memory problems. Carol has immersed herself in Alzheimer’s education by reading and attending conferences, workshops, and support groups. Carol is a CARES Dementia Specialist and is Alzheimer’s Association essentiALZ Plus certified. She was the winner of the 2012 “Your Favorite Memory” essay contest sponsored by the Delaware Valley Alzheimer’s Association. She has a passion to share her knowledge and make the journey for Alzheimer’s caregivers less stressful and more rewarding. She is also working to help eliminate Alzheimer’s disease as an Alzheimer’s Association volunteer, fundraiser, and advocate.

Carol has a B.S. and M.Eng. in chemical engineering from Cornell University. She retired from a thirty-five-year career at The DuPont Company. She is active in her church (youth ministry, women’s ministry, usher board, and construction committee). She has been married to her husband, Alvin, for nineteen years. She enjoys tennis, travel, and gardening at her home in Delaware.

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For more vetted books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore. Reposted with permission of AlzAuthors, the global community of authors and readers whose lives have been touched by Alzheimer’s and dementia. I am a co-founder and admin.

From the AlzAuthors Blog: Meet Tamara Prosper, author of “The Elders,” a Collection of Short Stories

Elders are not merely old people. Regardless of their current condition, at heart they’re still parents, spouses, teachers, veterans, housekeepers, artists, entrepreneurs, farmers, neighbors, caregivers, and friBy Tamara Prosper

Ever since I can remember trying to navigate through grief, frustration, anxiety, anger and sometimes even joy, writing has been the compass that lead me to equilibrium. Seven months after uprooting my family by moving from our home in a major southern city to take what I expected to be my dream job as the Administrator of a beautiful nursing home in rural North Carolina, I was exhausted, frustrated, angry and depressed. My children had quickly adjusted to our new environment. My husband seemed to be moving forward in his business endeavors. He and the children appeared to be quite content with everything except for the fact that I spent very little time with them. My friends lived far away and I had little time to make new friends so I poured my feelings into journals.

When saddened by the unexpected death of a resident, I wrote. When I was frustrated by demands from the corporate office, I wrote. When angered by the unrealistic expectations of resident’s family members and when my character was questioned, I wrote. When my staff was mistreated and when we celebrated our first deficiency-free annual state survey, I wrote. I wrote of individuals that I worked with before moving to North Carolina. I wrote my imagined explanations for the exasperating behavior of certain residents and their loved ones. I placidly withstood and gently addressed blatantly disrespectful behavior from a resident’s family member, then filled pages with the fury that had been veiled behind my calm demeanor. Hurt feelings, sweet memories, righteous indignation, joy, sorrow, celebration, dread, and voracious hope flowed from my spirit to my journals.

book cover (1)In nine months I had written and edited more than a dozen stories, finally choosing those that I believed were worthy of sharing with the world. I wanted people to see the humanity of elders and their caregivers. Elders are not merely old people. Regardless of their current condition, at heart they’re still parents, spouses, teachers, veterans, housekeepers, artists, entrepreneurs, farmers, neighbors, caregivers, and friends. They want what everyone wants – to enjoy a good meal, to laugh at a funny story, to spend time with loved ones, and to contribute to the world. Caregivers, whether professionals or responsible loved ones, are among the unrecognized heroes of our society. They give far more than they receive, simply because they know it must be done. By sharing varying perspectives and situations I seek to make these truths known.

By having a glimpse into the lives of The Elders, people may recognize someone they know or have a frame of reference for someone in the future. I want people to feel a connection with The Elders so they will empathize with and advocate for the elders in their communities.

Purchase The Elders

About the Author

Tamara G. ProsperI’m an Aging Services Professional with a sincere love for older adults and a resolute desire to see them thrive throughout all stages of life. I work directly with elders in organizations that support their care. I share as much information as possible with as many elders and caregivers as possible, to prepare, inform, educate and encourage them as they experience aging. I’m thankful to have received very positive feedback from readers.

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For more extraordinary books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore.  Reposted with permission of AlzAuthors, the global community of authors and readers whose lives have been touched by Alzheimer’s and dementia. I am a co-founder and admin.

From the AlzAuthors Blog: AlzAuthors Launches Its “Inspiration Collection” During Cruise Dementia Conference

AlzAuthors is thrilled to join a new cruise and conference designed for those living with early-stage Alzheimer’s, their caregivers, and their loved ones. The AlzAuthors Inspiration Collection: Extraordinary Books about Alzheimer’s and Dementia will sail to the Caribbean April 6-13 during the inaugural Connecting Circles of Care and Building Bridges of Hope Cruise & Conference, an empowering 7-day retreat experience that offers respite and education.

Lisa Chirico

“Our cruise and conference provide an opportunity for attendees to benefit from a wide range of programming created for their complex and stressful lives,” says Lisa Marie Chirico, Dementia Caregiver Cruise and Conference Producer. “Additionally, the tropical wonders and beauty of the Caribbean offer healing for both the body and the spirit, so it’s a perfect pairing.” Chirico was a full-time caregiver for her father, who had Alzheimer’s disease, and is passionate about supporting dementia caregivers and their families. She currently works as a Nursing Home Navigator Coach for clients experiencing long-term care at Nursinghomeology.com.

We are deeply grateful to a generous sponsor who has underwritten the costs of bringing this collection of books to the cruise conference. A cross-section of memoirs, novels, caregiving guides and more from our bookstore will be selected for inclusion based on the needs of conference attendees. In addition, each participant will receive a copy of our anthology, Alzheimer’s and Dementia Caregiving Stories, Volume 1.

A distinguished panel of dementia and senior care practitioners and professionals will join Chirico for this conference, including AlzAuthors co-founder and manager Marianne Sciucco. An experienced cruiser, Sciucco is excited to join the cruise and conference, and remembers one cruise where she encountered a woman with dementia and her attentive family several times throughout the week.

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“I was pleased to see the family taking a vacation together but had lots of questions,” she says. “How were the woman’s special needs being met? What if she wandered away from her family and got lost? Which activities were meaningful to her? What happened when the ship docked, and the family went on excursions? Did she join them or stay behind? Who watched over her? The whole thing seemed complicated. A cruise experience that addresses these special concerns is a wonderful opportunity for these families to grab some needed respite and make lifelong memories.”

Sciucco will present her program, “How Three Daughters of Dementia Started AlzAuthors, a Global Community of Writers Sharing their Dementia Stories,” and will also present a Book Club-style meeting for her novel Blue Hydrangeas, an Alzheimer’s love story for attendees who read the book prior to departure.

Additional presenters include:

  • Jeff Borghoff, Living with and Fighting the War on Alzheimer’s Disease With Love Action: “Embracing Change and Living Confidently With Alzheimer’s Disease”
  • Lisa Marie Chirico, Cruise and Conference Producer, and Nursing Home Navigator Coach: “Resilience Strategies I Wish I’d Known When I Was a Caregiver”
  • Daniel J. Hutcherson, Financial Gerontologist, and 20-year Wall Street Veteran: “The Six Domains of Financial Exploitation: Protecting Your Money and Your Independence”
  • Peter Maeck, Writer, Photographer, Teacher, and Speaker: “Remembrance of Things Present: Making Peace with Dementia”
  • Christy Turner, Founder of Dementia Sherpa: “The Dementia Sherpa’s Roadmap to Being the Best Darn Dementia Care Partner You Can Be (Even When You’re Feeling Worn Out or Frustrated)”
  • Gene Saunders, Founder & CEO, Project Lifesaver International: “Discover How Project Lifesaver Protects Your Loved One and Provides Your Family with Peace of Mind”
  • Daphne Glover Ferrier, Award-Winning Film Producer, and Co-owner of Backfin Media: “SPENT – The Hidden Cost of Dementia”
  • Loretta Anderson, Independent Healthcare Researcher Investigating Lifestyle Interventions in Alzheimer’s Disease and Healthy Brain Aging: “New Lifestyle Interventions for People With Dementia and Their Caregivers”

This cruise is suitable for those in the earlier stages of Alzheimer’s, and their caregivers and other family members, as well as practitioners and advocates who focus on healthy aging, gerontology, brain health, and dementia.

Couple in hug sitting together at the Caribbean Sea

The seven-day cruise and conference sails to the Caribbean on Holland America’s MS Oosterdam and departs from Fort Lauderdale, FL on April 6th, 2019 with stops in Key West; Turks and Caicos; Amber Cove, Dominican Republic; and Holland America’s award-winning private island Half Moon Cay, Bahamas. All cruise reservations must be made through Jody McShea at DePrez Travel Bureau, Inc., who can be reached at (585) 442-8900, extension 208, or via email at jmcshea@depreztravel.com.

For additional information contact Lisa Marie Chirico, Dementia Caregiver Cruise and Conference Producer, at lisa@nursinghomeology.com or call her at (646) 784-7629.

Holland America’s MS Oosterdam

From the AlzAuthors Blog: Jessica Bryan Returns with “The Mighty Ant – An Anthology of Short Stories for Seniors”

_just like the little ant, whose size is disproportionate to its strength, so can stories have strong impact, regardless of their length._
By Jessica Bryan

I am an author of over 28 books who has always shared my stories with my mother. Sadly, Mom suffers from Alzheimer’s, and as the disease has progressed she no longer comprehends more intricate plots, nor can she focus on longer, more detailed stories.  As a consequence, I began reading short stories to her. I noticed that after reading something more easily comprehended, there was often something in the tale that sparked a memory and conversation.  “Do you remember gardening?” I asked her after reading about a gardener. It brought a sweet reminiscent moment that included smiles and even laughter. That spawned my idea for a book of short stories specifically dedicated to the elderly with cognitive issues and their caregivers who often search for activities that will provide quality time with their loved ones.

the mighty ant

Recently, I was involved in a project for the county to discuss the needs of aging communities. It was abundantly clear that caregiving services were needed without enough funding to provide these services. I thought that I could combine the idea of a book of short stories for seniors with a fundraiser for the Council on Aging.

I put out a call for submissions from authors who might be interested in participating, asking for a donation of short stories with a focus on brevity and simplicity.  The profits from the book sales would be given to North Carolina’s Chatham County Council on Aging.  The authors were more than happy to generously share their work with no thoughts of remuneration.  The results were submissions from all over the world. They were charming, memory and conversation-provoking stories from 33 authors.

Editing was difficult because of the 55 stories that were accepted there were so many others that were submitted. Late nights and reading aloud to my wonderful husband helped narrow down the choices. Not all the writers were authors. Many were people who simply wanted to participate and believed in the cause. Many had been or currently were caregivers themselves and could relate to the needs of caregivers and their loved ones for whom they were caring.

The title of the book came to me one day as I observed a little black ant carrying something large to its nest. I thought about the strength of an ant. Titling the anthology The Mighty Ant I explained on the cover, “Just like the little ant, whose size is disproportionate to its strength, so can stories have strong impact, regardless of their length.”

In addition to my own stories I wrote for the anthology, I’ve also written many other books ranging from fiction, Young Adult fiction, children’s books, to non-fiction (humor, self-help, and inspirational) books. My four-book series on caregiving has been described as books that should be required reading for those involved in caregiving because they are helpful, informative, raw, humorous, truthful, and real accounts of what a caregiver actually experiences.

Several AlzAuthors are featured in this anthology: Angela G. Gentile, Irene Olson, Marianne Sciucco, and Vicki Tapia.

Purchase The Mighty Ant

jessica bryanAbout the Author

Jessica Bryan lives in North Carolina where she is a real estate broker and an active advocate for caregivers and care receivers. Jessica has written all her life, but during the past few years she began writing full-length books, including fiction and non-fiction, books for young adults, and some wonderful Juvenile action-adventure books.  Her interest in writing about caregiving began when her mother came to live with her and her wonderful husband, Skip. Jessica loves to laugh and claims that her sense of humor shines though all of her books regardless of the subject matter.

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 For more extraordinary books about Alzheimer’s and dementia please visit the AlzAuthors Bookstore.

Reposted with permission of AlzAuthors, the global community of authors
and readers whose lives have been touched by Alzheimer’s and dementia.
I am a co-founder and admin.

The Writing Life: Author Collaborations – How to Make Friends and Find Readers

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This post was originally published on Books Go Social and is reprinted with permission.

By Marianne Sciucco

In 2013, when I published my first novel, Blue Hydrangeas, an Alzheimer’s love story, I was like most new indie authors: I had no idea how to market it or find readers. My first efforts were disappointing, and I found myself struggling to find footing in an overcrowded book market. The fact that my book was a sort of niche book on a difficult subject added to my frustrations.

In addition to being a writer I am a registered nurse with no formal training, education, or work experience in publishing, business, or marketing. I learned all I could on my own by attending conferences (online and in person), reading books and blogs, and participating in webinars and online classes.

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Two years later my studies led me to the concept of Author Collaborations: Symbiotic relationships with authors writing in my genre to cross-promote our books and share each other’s audiences. It sounded interesting, so I decided to seek out authors of books about Alzheimer’s and dementia to build a marketing platform to serve all of us. Little did I know that three years later I’d be one of six daughters of dementia at the helm of a global community of 170+ authors known as AlzAuthors.

The Story Behind AlzAuthors

The first person I contacted was Jean Lee, author of Alzheimer’s Daughter, a memoir. She’d written to me months earlier to tell me how much she loved my book and to ask if I would read hers and give my opinion. I thought her book was excellent and encouraged her publishing endeavors. When I approached her with the idea of working together she jumped at the opportunity. I asked if she knew of anyone else and she recommended Vicki Tapia, author of Somebody Stole My Iron: A Family Memoir of Dementia.

Vicki was a bit skeptical, wondering how it would benefit her to promote other authors’ books. Jean and I reasoned that caregivers need a variety of good books and other authors are not our competition. There’s strength in numbers, we said, and we could all support each other and our readers. Vicki decided to give us a chance, and the three of us embarked on a month-long campaign in June during the Alzheimer’s Association’s Alzheimer’s and Brain Awareness Month, piggybacking onto an established, national movement. We posted about it on our blogs and shared it on our social media, primarily Twitter and Facebook. We created our own hashtag, #AlzAuthors.

Our success at this encouraged us to join forces once again during National Caregiver Appreciation Month in November. We called it the “#AlzAuthors: Ending the Isolation of Alzheimer’s” campaign and again posted on our blogs each week, shared on Twitter, and hosted a Facebook event. This campaign also met with success, and we realized we were on to something. Plus, we enjoyed working together, sharing our stories and helping readers find our books.

How We’ve Grown

Our next endeavor in 2016 was much bolder. We launched our own AlzAuthors blog featuring a new author and book each weekday in June, Alzheimer’s and Brain Awareness Month. We also cross-blogged to our own personal blogs. It was a challenge to find 20 authors willing to post with us, an unknown entity, and to get the posts ready each day, but when the month ended we decided to continue, although on a once a week basis. Each new post is promoted on AlzAuthors’ own Twitter, Facebook, Instagram, and Pinterest feeds, and to our audience of authors and Friends of AlzAuthors via personalized emails. To date, we have featured more than 150 authors and are scheduled six months ahead. Authors now seek us out.

Since 2016 our management team has been joined by three more talented authors and daughters of dementia dedicated to Alzheimer’s awareness: Kathryn Harrison (Weeds in Nana’s Garden, children’s’ literature), Ann Campanella (Motherhood Lost and Found, memoir), and Irene Olson (Requiem for the Status Quo, fiction). Each of our admins brings special and much needed skills to the organization. Five of us hail from across the United States and Kathryn joins us from Canada. We communicate and manage AlzAuthors using email, Slack, Google Hangouts, Skype, text messages, and telephone calls. In November 2018 the full team met in person for the first time at the National Caregiving Conference in Chicago. Here we are wearing our exclusive AlzAuthors apparel with the beautiful logo Kathryn designed.

alzauthors admins

L to R: Ann Campanella, Marianne Sciucco, Kathryn Harrison, Jean Lee, Vicki Tapia, Irene Olson

More Growth

As the blog expanded we added the AlzAuthors Bookstore and became Amazon Affiliates to help raise funds to support our organization. We also developed a resource page of helpful organizations we partner with, and host group book sales at least twice a year. Other ventures include presenting our books and organization at conferences with local Alzheimer’s Association chapters, showcasing our members’ books on dementia-friendly cruises, publishing Alzheimer’s and Dementia Caregiving Stories, an anthology of our first year’s posts, writing for the Huffington post and  Maria Shriver’s Women’s Alzheimer’s Movement and other dementia blogs and websites, and promoting Alzheimer’s awareness and AlzAuthors on podcasts.

What We Learned

Our collaboration has taught us a great deal about cross-promoting, our audience, and our authors.

From the start, Jean, Vicki, and I worked well together and were dedicated to our mission, but a few authors who agreed to collaborate with us on those early ventures did not or could not share our enthusiasm or stay active for long because of one reason or another: Personal issues, a high-powered job, an author’s own progressing Alzheimer’s. This led to our carrying the full load, and since this was a collaborative effort there was disappointment, and in some cases, hard feelings for those we felt let us down. We learned to choose our partners with care, and made our expectations known before taking on a new admin.

We also came to understand not all our authors are interested in becoming full-time authors or in writing new books (although many have.) Some are still on their caregiving journeys. Others are living with the disease themselves. Most wrote their books long after their dementia journeys ended and are ready to put their dementia years behind them and move on. Yet we maintain a core of authors who continue to write about dementia and caregiving or in other genres and want to promote their work and raise Alzheimer’s awareness. They are the driving force behind our success.

We also learned every dementia story is different and it’s important to respect those differences and feature books and blogs that speak to the experience of as many caregivers and families as possible. This sometimes leads to interesting discussions as to whether to take on a new book or author. Our authors are our greatest strength because they are not professional writers but ordinary people with compelling stories. Many are self-published. All are worthy of attention and have something of value to impart to readers.

Another important thing we’ve learned is our target audience is more than what we originally envisioned. When we were each living our own dementia stories we hungered for books and blogs to guide us and discovered a startling lack of resources. We each wrote the book we wanted to read. Recognizing that need, our mission has always been to help caregivers find written resources to support their caregiving needs, but our efforts have shown us they are often too consumed with their own daily difficulties and don’t have time to read. Some don’t want to read about a tough situation they are currently living. We shifted our focus to market not to just caregivers – we will never not address them – but to others involved with Alzheimer’s and dementia care: Medical and nursing professionals, social workers, elder law attorneys, financial planners, support organizations, and nursing home and assisted living personnel.

Where We Are Now

In three years, without realizing it, we created an organization that fills a void, a niche. We are entrepreneurs of a global community of authors writing about the most important disease of our generation. We support each other professionally and personally.  I experienced this myself when my stepfather was diagnosed with mixed dementia in late 2015 and I became his medical, legal, and financial representative. The support of my admin team was invaluable and much appreciated.

In 2019 we have some interesting plans, including becoming a 501 3c, participating in another dementia friendly cruise, publishing a second anthology, and much more.

If you would like to start your own author collaboration here are some tips.

13 Tips for Starting an Author Collaboration

  1. Choose your partners with care. You will work closely together on a shared mission.
  2. Brand your group. Come up with a catchy name, a mission statement, an easily recognized logo.
  3. Stick to your purpose so readers aren’t confused.
  4. Set a schedule and keep to it so readers know when to expect to hear from you.
  5. Establish a few guidelines for which authors/books to include. Evaluate books and authors critically. Analyze the writing, the reviews, and the author’s platform. Expect them to promote their involvement with your collaboration.
  6. Build social media pages for your group and post to them each day. Monitor and respond to feedback. Create your own hashtags and use them.
  7. Offer a convenient, private way for admins to communicate, i.e. Slack, Google Chats, Skype.
  8. Offer a convenient, private way for members to communicate, i.e. a Facebook group.
  9. Keep it fresh – run group book sales and other special promotions.
  10. Develop a mailing list and use it each time a new post is published.
  11. Reach out to others working in your field, i.e. book bloggers and reviewers, organizations, agencies, and cross-promote with them on their websites, blogs, and social media.
  12. Consider becoming an Amazon Affiliate to help raise funds to keep the collaboration alive.
  13. Understand it takes time – perhaps years – to build a following.

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From the AlzAuthors Blog: Meet Gincy Heins, Editor of “Before the Diagnosis – Stories of Life and Love Before Dementia”

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By Gincy Heins

As I was texting a friend who would be meeting my family for the first time, I realized she would never know so many aspects of my husband, and I started to cry.

She would never know the person who talked easily and could captivate people with his stories about working at Disneyland. She would never know this man who could repair anything that needed fixing in our house and was called by other people to answer their home repair questions. Instead, she would see my husband as a rather quiet person who didn’t have a lot of confidence in his abilities and often couldn’t make a decision about the simplest things.

Wiping my tears, I thought of the many incredible people I now know who had Alzheimer’s or another type of dementia. I got a glimpse of who they were through stories their spouses told, and I wanted other people to see how amazing all these people were. Whether they were amazing because they were highly respected in their career or they lovingly raised their family, I felt their stories should be told.

I emailed everyone I knew whose loved one had any type of dementia and told them I had an idea for a book sharing stories about who our loved ones were before they had a dementia diagnosis. I reached out through social media and I asked Alzheimer’s Orange County to help me spread the word. When being filmed for a MyAlzhemer’s video I invited the producer to share a story. I reached out to as many people as I could.

I had no idea if anyone would respond positively, or at all. I hoped for ten stories and was thrilled when I received 36 contributions! This was so much more than I dreamed of receiving!

gincy coverI enlisted two friends to help with the editing. Together we read through each contribution many times and edited for clarity, all the while trying to keep each person’s story in their voice. All authors approved the final version of their story.

Finding the perfect publishing option was a challenge, but I knew we would find the best way to publish this important work. Most publishers never responded. One was very interested in the concept, but didn’t want to deal with a book involving 36 authors. Self-publishing had too many considerations. A friend came to the rescue and handled that for me. Whew!

On March 12, 2018, Before the Diagnosis: Stories of Life and Love Before Dementia was published on lulu.com (and is now available there as well as from Amazon and Barnes & Noble). This anthology of 36 stories has been well-received and shows that people are not forgotten or unimportant because of their diagnosis.

As of the end of December, over 230 copies of the book in print and digital formats have been sold. Each of the 36 authors who participated in this book were given the option of donating their share of the earnings or retaining them. I am thrilled that over 90% of the revenue is being donated to one of four nonprofit organizations: Alzheimer’s Orange County, Alzheimer’s Association, Lewy Body Dementia Association and Alzheimer’s Research and Prevention Foundation.

Purchasing this book gives back to organizations that help us on this journey, benefitting all of us.

About the Author

Gincy Heins

Gincy Heins is the creator and editor of Before the Diagnosis: Stories of Life and Love Before Dementia and one of the co-authors of the 365 Caregiving Tips: Practical Tips from Everyday Caregivers series of books.

She teaches classes for older adults, is a Senior Commissioner for Cypress, CA, speaks at conferences and on panel discussions, and volunteers at the public library and with Alzheimer’s Orange County. She and her husband are the proud parents of one grown son.

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