From the AlzAuthors Blog: Ellen Smith Discusses Her Alzheimer’s Novel “Reluctant Cassandra”

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By Ellen Smith

Reluctant Cassandra came to me first as a title. I’ve always been fascinated by Greek mythology and especially with the character of Cassandra. She was given the gift of prophecy along with the curse that her warnings would never be believed. In Greek mythology, Cassandra’s story ends with the fall of Troy—a tragedy she foresaw but was unable to prevent.

What would it be like to see the future and still be helpless to change the outcome? Unfortunately, I’ve lived that experience. Many of us have. When I wrote my own version of a modern-day Cassandra story, I imagined a woman whose father had been diagnosed with Alzheimer’s. She could see clearly that his health was deteriorating, but it was still so hard for her and her family to accept the future that was unfolding.

Reluctant Cassandra LargeThe journey that my characters took through anticipatory grief was very similar to what I had just been through in my personal life. I actually wrote Reluctant Cassandra the year after I lost my son. Living through his diagnosis and passing was a heartbreak I hadn’t been able to put into words, but when I stepped into this fictional world, the pain of my own Cassandra experience poured out.

While writing Reluctant Cassandra was cathartic, the story continued to take on a life of its own after publication. Only a week after my release date, I received my first letter from a reader. She had connected strongly with the story because it mirrored her own experience after her father was diagnosed with Alzheimer’s. I was so touched that she reached out to share that with me—in fact, I still have her email printed out and pinned over my desk! Her letter was later joined by more notes from other members of the Alzheimer’s community. Here I had written this story at a time when I felt so alone and now it was connecting with readers from all over.

In the three years since Reluctant Cassandra was published, I’ve continued to write and advocate for those with Alzheimer’s. I released a short story collection loosely based on the setting of Reluctant Cassandra on Channillo for Charity, with all proceeds going to benefit the Alzheimer’s Association. Even though I didn’t know anyone with Alzheimer’s when I was first writing Reluctant Cassandra, this disease now has many faces for me. I see those who have been diagnosed with Alzheimer’s themselves, as well as their families, friends, and caregivers. I’m grateful to them for telling me their stories, and honored that they are willing to hear mine, too.

This is the true gift of a story: it reaches across the barriers of time and place and circumstance and allows us to connect with each other. The Greek myth of Cassandra was first told hundreds of years ago, and yet the story still impacted me as a 21st century reader. My novel was inspired by a grief I couldn’t put in to words, but writing this story allowed me to become a part of the Alzheimer’s community. I could never have imagined where the book would lead me when I first thought of the title years ago. I am beyond grateful that it brought me here.

author headshotAbout the Author

Ellen Smith is the author of Reluctant Cassandra, Every Last Minute, and the Channillo for Charity series Ghosts of Eagle Valley, which benefits the Alzheimer’s Association. When she isn’t busy writing, Ellen can usually be found reading, crafting, or playing piano. No matter what she is doing, Ellen is always wondering, “What if?” Ellen lives with her family near Washington, DC.

 

 

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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: Florrie Munat Shares her Lewy Body Caregiving Story in “Be Brave”

Florrie Canva

Love Remains

By Florrie Munat

“Are you going to write about this?” Chuck asked.

I stopped sorting the pile of laundry that a nursing home aide had just left on his bed and turned to look at my husband. Had we not been married for thirty-six years, I might not have known what he was talking about. But in addition to our long marriage, for the last two years I’d been supplying him with words he could no longer remember. So it took me only a few moments to figure out exactly what he meant.

He was referring to the soul-shattering changes that followed his stroke and Lewy body dementia diagnosis. Those changes had ended the chapter of our marriage when we lived together in equal partnership under one roof, and had begun the current chapter in which Chuck was a nursing home resident and I was his daily visitor. He was asking if I was going to write about those changes.

Back when I worked as a librarian and writer, and Chuck taught high school English and then edited a national classroom newspaper, our married life included some major changes (a cross-country move from Connecticut to Washington) as well as some tragedies (the death of his ex-wife, which led to my adopting his three young children).

But those changes seemed simple compared to this one because I felt alone now. I had become the sole repository of many of our once-shared memories, which left me with a profound sense of loss.

By asking this question, Chuck was giving me permission to document and reflect not only on the cataclysmic events of the past two years, but also on however many years lay ahead of us. His question: “Are you going to write about this?” was also a request. If he’d been able to frame it differently, Chuck might have said, “It’s up to you to tell our story now because you’re the only one who can. And others may be helped by knowing what happened to us.”

Four more years passed before we had to say our final goodbyes, and during that time he continued to remind me, “Are you going to write about this?”

be brave cover imageHis question planted the seed that grew into my memoir, Be Brave: A Wife’s Journey Through Caregiving. He even gave me the title on the day he decided to stop eating and drinking and told me to “be brave.”

With the exception of one chapter about our family’s celebration of the Irish New Year shortly after Chuck’s dementia diagnosis, I wrote the first draft of Be Brave after Chuck died in 2009. Then, with the assistance of an insightful developmental editor and a talented book designer, I spent three years rewriting that draft—and in December 2017, Be Brave was finally published. Kirkus Reviews chose it as one of its Top Indie Books of 2017, calling it “a beautiful, richly panoramic book that should reassure caregivers and delight memoir readers.”

While I worked on Be Brave, I was processing my grief by writing and rewriting our story until I found some meaning in those six nursing home years by placing them in the context of our forty-year marriage. This is not to say I discovered a reason why our lives played out the way they did. That remains an unknowable mystery. And if I could have an intact, healthy Chuck back right now, I’d do it in a heartbeat.

But by writing our story, I did find some consolation embedded in our suffering. And that is that no matter how difficult life became during the caregiving years, our love for one another was never in doubt or in danger. In fact, had we not lived through those last six years, we would not have known the depth and magnitude of our love.

Like all good teachers, Chuck asked questions; he didn’t provide the answers. He wanted me to figure out why “writing about this” would be a good idea. I think he knew his question would lead me to the understanding that even after much is taken, much abides. Now his illness is gone. But our love remains.

florrie munatAbout the Author

Florrie Munat is the author of Be Brave: A Wife’s Journey Through Caregiving (2017), a memoir focusing on the years she was a caregiver for her husband Chuck who suffered from Lewy body dementia. Florrie has published several children’s books, articles, stories, and over 150 young adult book reviews. She’s worked as a reference librarian, English teacher, and university press worker. She lives near Seattle, Washington, where she records audiobooks for the Washington Talking Book & Braille Library, and is writing a YA novel and a memoir about grieving. Learn more about Florrie and Be Brave at www.florriemunat.com.

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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: 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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From the AlzAuthors Blog: Meet Richard Creighton, Blogging at “Living with Alzheimer’s”

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By Richard Creighton

Why would a 78-year-old grandfather who doesn’t like to write become a blogger? The answer lies in my personal experience before my wife Kate was diagnosed with Alzheimer’s in 2011.

We played a major role in caring for our parents. There was a lot to learn. I felt we knew far too little about our parents’ experiences before our involvement in their lives. Kate and I were happy to have cared for them, but we wanted to make life easier for our own children. That meant keeping them knowledgeable about our lives. That, in turn, led me to start a journal the day of Kate’s diagnosis. This was a way to document our experiences for future reference.

After a year or two, I began to think that my journal might be of interest to others, especially those who are living with Alzheimer’s themselves. It was too much for a book, and I was continuing to make regular entries. A blog seemed like the way to go.

There are three things about our story that make it a little different from others. First, it is both an account of our post-diagnosis experiences, as well as a “real-time” account of what is happening every day. Second, ours is a story of optimism and joy. No couple escapes the challenges of dementia and the sadness that comes with it, but we have been able to live happily throughout our journey. Third, it is not a place to look for advice. I believe there are many other sources for that. This is simply our story. It tells what it’s been like for us to live with Alzheimer’s.

We’ve maintained an active lifestyle throughout our journey. Most of that has involved our everyday activities here in Knoxville. We attend most of the theatrical productions at three of our local theaters. In addition, we attend a variety of musical events that include opera, jazz, and Broadway. We have traveled a good bit over the course of our marriage. Since Kate’s diagnosis, we’ve enjoyed an African safari and trips to Machu Picchu, the Galapagos, and New Zealand. Our last and final international trip was to Switzerland in 2015, where we both paraglided off the mountain top overlooking Interlaken.

About a year after her diagnosis, we started eating out for all our meals except breakfast. For us, that has proven to be one of the best decisions I’ve made. The meals themselves have been secondary. The important thing is that it has helped to minimize stress and social isolation. It wouldn’t be for everyone, but it works for us.

We’ve been very fortunate. We continue to enjoy life and each other even though Kate’s memory is virtually gone. It is only now that we are reaching the hardest part of our journey. Our experiences may not be representative of others, but I am sure that almost any primary care partner will recognize the issues we have faced. If you get a chance, drop by sometime: Living with Alzheimer’s Blog.

photo 2 richard creighton jpgAbout the Author

Richard Creighton is a former college professor and business owner. He and his wife, Kate, met in college and have been married 55 years. They have a daughter and a son and five grandchildren.

Caregiving has been a central part of their lives since the Fall of 1989 when Kate’s father had a stroke. Three of their parents were cared for and died at home, his father in the hospital. Kate’s mother lived in their home for almost 5 ½ years with 24/7 care provided through an agency. Through those experiences Richard learned much about the health issues, living arrangements, and personal care for people with dementia.

Kate was diagnosed with Alzheimer’s two years before his dad died. He says that his experiences with their parents has helped him to be a better primary care partner for Kate. He is guided by his belief that there is no greater privilege than to walk with someone you love through the last chapters of her life.

Connect with Richard Creighton

Living with Alzheimer’s Blog

Twitter: @LivingWthAlz

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