ALZAUTHORS--Writing Stories THAT SUPPORT FAMILIES IMPACTED BY DEMENTIA

As many of you know, my family, like many of yours, was rocked when our mother received the diagnosis of dementia. I found support and understanding from a group of authors who were likewise affected by this disease. In some cases, it struck the authors' loved ones. In other cases, the author themselves were impacted.

My award-winning novel, "The Dragons of Alsace Farm," illustrates the impact dementia has on a 82-Y-O French WWII survivor named Agnes, and the people who love her. My mother inspired me to make Agnes a dementia sufferer so I could begin a dialogue about this disease. "Dragons" led me to find an extraordinary group of authors-- Alzauthors.

I'm now proud to be a member of this empathetic writers guild who write books about their journey with this disease. Some of the stories will make you laugh. Some will make you cry. All will touch you deeply and offer readers similarly affected a place to feel understood.

Alzauthors is hosting an book promo to make readers aware that such books even exist. I'm late in announcing this because I was on vacation, but I wanted to at least get this posted   Feel free to browse these books, or please share with someone you know who might find these books a comfort. 

MY GUEST APPEARANCE ON "THE DEMENTIA ROUNDTABLE."

THE DRAGONS OF ALSACE FARM , my eighth novel, turned out to be a very different book than the historical fiction novel I intended. After my mother's diagnosis of dementia, and after watching the complexities this disorder added to every element of her life, I decided to write my World War II survivor, Agnes, as a woman affected by dementia, to showcase this disease, and to illustrate its impact on its sufferers and their families.

It was a delight and a joy to discover so many authors and other advocates for dementia awareness on social media. I found a lively group of generous authors, The Alzauthors, on Twitter, and they welcomed me and "The Dragons of Alsace Farm," into their circle.

From that association, I connected with Gary Joseph LeBlanc, host of the podcast, "The Dementia Roundtable. Aside from supporting his own family members struggling with this disease, Gary is also an author, a columnist, a National Dementia Care Speaker and Advocate, founder of the Dementia Hospital Wristband Program and Dementia Mentors. and a dementia care educator. I was honored when he invited me to be a guest on his podcast to discuss our family's experiences in supporting a loved one with dementia.

Here is the podcast.

DEMENTIA ROUNDTABLE CONVERSATION with LAURIE LEWIS from Dementia Mentors on Vimeo.


From this discussion and many others with loved ones and providers, I share a few insights associated with this disorder.

1. Have the hard conversations early, when parents are healthy, so children aren't left to make
    agonizing decisions without their informed input.
2. Prepare financially for the possibility of a dementia diagnosis.
3. There is no "one-size-fits-all-solution. Look at in-home care, live-in support, and small group
    homes. Institutional care is not the only option.
4. Alzheimer and dementia patients can enjoy many happy, productive years with assistance.
5. There is guilt. If you intervene, your loved one will be angry. If you don't, they will suffer.
6. There is more guilt . In many circumstances, because of other responsibilities and demands, you
    may not be able to personally provide what your loved one wants and needs.
7. There will be judgment. Brace for it.
8. You will need support. Someone you can talk to and cry with.
9. despite the changes occurring, your family member is still in there.
10. When you can't add to their memories, make moments.

Book Nook Review of "SWIM SEASON," by Marianne Sciucco

SWIM SEASON

by

MARIANNE SCIUCCO

Marianne Sciucco’s captivating YA novel, SWIM SEASON, is the “All The Right Moves,” of swimming, illustrating the high-stakes pressure placed on premier athletes whose collegiate hopes and dreams are pinned to success in the pool. As the mother of a competitive swimmer, Sciucco draws from first-hand experience, giving readers a real glimpse into the mindset of these elite swimmers, whose bonds of friendship are tested on the starting blocks, while they also deal with all the other demands of youth.

Swim Season is more than a story about swimming. It is a story of friendship, family loyalty, hard work, and dedication. A whopper of a book, it weighs in at just under six hundred pages. Don’t panic. Sciucco breaks the book down into eighty-eight short, satisfying chapters that allow readers to nibble at the book for days. I found the characters and situations so compelling that I grabbed my tablet every time I had a moment. Yes, it’s that good.

The book opens with tough and guarded transfer student, Aerin Keane, walking into tryouts for Division Champions Two Rivers High School Girls Varsity Swim and Dive Team. Divorce, and other troubles we are dying to understand, cause Two Rivers to be the senior’s third high school. More troubling is that she’s not living with either parents. By the time Aerin shoots off the block for her inaugural swim at Two Rivers, we are hooked and hungry for answers.

Marianne Sciucco doles out breadcrumbs at a delicious pace, while always keeping us at the edge of the darkness, compelling us to follow willingly. Kudos for Sciucco’s characters, who are distinct and complex, as are their individual voices. Aside from Jordan, the team bully, the author makes it difficult to separate good girls and mean girls. All are flawed. All are compelling. All have moments of redemption. We empathize with Aerin and all these young athletes who bear adult responsibilities and pressures while having little to no control over their environments and family lives. 

The book is a resounding testament to the complexities of this stressful, sometimes fickle, almost always sleep-deprived, season of life, where friendships are fragile, families are complicated, and big money and entire futures are on the line. I highly recommend Swim Season. All athletes will see themselves in the sacrifice and dedication displayed here, and people who love a young competitor will better understand the mindset of those who do not merely play a sport, but who identify as “athletes.”

SWIM SEASON is available at Amazon. 

WE ARE ALZAUTHORS: The Inspiration Behind "Dragons."

I was honored when Marianne Sciucco, (author of the newly released "Swim Season,") invited me to guest post on the "We Are Alzauthors" blog. Marianne, and several other authors impacted by dementia/Alzheimers, began this blog "to provide resources for those living with dementia, and their caregivers." Collectively, this group offers decades of experience in living joyfully in spite of this disease. Here's the article, but please visit the site and check out my friends' books. Their stories will remind you that you are not alone.

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THE STORY BEHIND "DRAGONS"

Like our family, my proposed WWII mystery, “The Dragons of Alsace Farm,” was also changed by our mother’s diagnosis of dementia.

After my father’s passing, Mom threw herself into her farm and animals, finding purpose in the care of her “babies” and the maintenance of her land. Progress on the book slowed when our previously happy, healthy mother began exhibiting signs of what we assumed was depression, needing more of our time and care. Her mood swings were erratic and her reality seemed very skewed. She was often sick, and we suspected that her hygiene and cooking skills were slipping, causing recurring stomach distress.

Over and over, we took her to her internist, pulling the physician aside to express our concerns that something was amiss. Each time, Mom charmed her, redirecting all questions about her health and routine to another topic with the skill of a railroad switch operator. We were always assured that she was great, and dismissed without getting any solid help. But the changes increased, and a neurologist finally concluded that Mom had dementia. Fear became her new reality. Fear, frustration, and guilt became ours. 

After interviews with caregivers, loved ones, and health care providers, we realized we weren’t alone. Although most people are impacted by dementia in some way, I was aware of only a few books tackling the topic. I decided to ramp up the tension in my book by placing my WWII survivor, Agnes, on the dementia spectrum, allowing me to offer readers a glimpse into the impact of the disease on individuals and entire families.

Soon after Mom’s diagnosis, we found a young couple with mild disabilities who wanted more independence. They moved into Mom’s home for a time, offering farm help and companionship in exchange for rent. Mom believed she was helping them, and they felt they were helping her. As a result, the three of them rose above their limitations to lift and serve one another. 

Inspired by these observations, I spoke with counselors at the local Department of Aging to see if we could pair people who have a home but need help, with people who could help but need a home.

Legal barriers killed the idea, but I decided to introduce this dynamic into the book. I turned to two friends/family therapists to help me accurately create Noah and Tayte—characters with alternative challenges who would similarly impact Agnes. My mystery had now morphed into a family drama about internal dragons—the fears and secrets we all battle.

It’s been very gratifying to see how people are reacting to the book. Many say it hits close to home. Readers love the characters, especially Agnes, who reminds them of some loved one who has been similarly affected by dementia. They also mention the hopeful, redemptive message in “The Dragons of Alsace Farm.”

On a personal note, writing “Dragons” was cathartic and healing. Writing Agnes’s scenes helped me step away from my concerns and see things from Mom’s perspective. Like Tayte, I finally stopped trying to “restore” her, and learned to appreciate her for whom, and where, she is. Like Noah, I recognize that she still remembers what matters most—love. 

Available on Amazon: