My Story “Mom’s Unexpected Birthday Guest” is Published in Chicken Soup for the Soul’s New Book “Mom Knows Best”

Marianne Sciucco with CS4S Mom Knows BestI’m proud and thrilled to announce that one of my stories was recently published in the new Chicken Soup for the Soul “Mom Knows Best.” It’s one of 101 heartfelt stories about life, love, and…  moms. The story, “Mom’s Unexpected Birthday Guest,” was inspired by my mom on the occasion of her 90th birthday party.

Mom loved birthday parties, especially her own, no matter how big or how small. The 90th was a big one, but, unfortunately, Mom had broken her hip and was laid up in rehab. We had to improvise to celebrate her special day, but in doing so something wonderful happened that made all the difference. Continue reading

With Recipes, Poetry, and Prose Author Miriam Green Shares her Alzheimer’s Story in “The Lost Kitchen”

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By Miriam Green

When my mom, Naomi, was first diagnosed with Alzheimer’s I felt relieved. The doctors had finally acknowledged what our family had surmised for almost a year—Mom was losing her memory. Ok, I thought, what now?

Little in our lives changed at first. Mom still rattled around in her kitchen, she was still an avid music lover, conversationalist, and sweet companion. She could maintain her household, and even stay by herself in the evenings when my dad, Jack, was busy. But the signs were everywhere.

There was the day she tried to unlock the front door to her apartment with the wrong key. It didn’t occur to her that she should try another one, or even ask for help. I was waiting patiently on the other side as she jammed that key into the door over and over, swearing in language I had never in my life heard her utter. Daddy rushed from the shower, thinking she’d hurt herself with all the screams. It took a while to calm her down.

What did change dramatically in my life was a commitment I made to visit my parents once a week. I traveled 2½ hours each way by public transportation to be with them. Mostly, I was there for Mom. Those were wonderful mornings. We would do all manner of activities together, ambling around the city, drinking coffee, and enjoying the sunshine. I used those visits to organize my parents’ kitchen and cook them food for the week.

cover 7b Top to Bottom FadeI was privy to Mom’s anxiety over her waning memory. I held her as she cried bitter tears and told me she felt confused. It was the first indication that our roles would soon be reversed, that I was losing my mom by degrees, that the only way forward was a painful decline that inevitably led to death.

It’s been more than seven years now. I’ve learned a few things along the way— to avoid questions in my conversations with Mom; how a person’s gait can define their ill health; that front-closing bras are an Alzheimer’s intimate friend; and how to judiciously use her memory loss for our gain.

I don’t think we can ever be prepared for the strange turns and curves life throws us, but I do know that it helps me to write about them. First came the poetry. Then, what was initially a project I started with my dad as a humorous initiation into the world of cooking and caring for a spouse with Alzheimer’s—we called it “The Man’s Emergency Cookbook”—eventually morphed into its current composition. Thus were born my cookbook and my weekly blog. I didn’t need to be alone in my frustrations, fears and struggles. I could connect with the community of Alzheimer’s patients, their families and caregivers who were only a short click away.

And through it all, I cooked. I took what Mom had taught me when she was still active in the kitchen and used that as a basis to experiment with easy recipes that fed my spiritual and emotional hunger. My book, The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver, is a combination of recipes, poetry, and prose about my family and how we have shared the demands of Mom’s Alzheimer’s.

About the Author

Green, Miriam headshotMiriam Green writes a weekly blog, The Lost Kitchen,  featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her blog also appears on the ALZ Blog from the Alzheimer’s Association.  Her poetry has been published in several journals, including Poet Lore, The Prose Poem Project, Ilanot Review, The Barefoot Review, and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. Her poem, “Questions My Mother Asked, Answers My Father Gave Her,” won the 2013 Reuben Rose Poetry prize. She holds an MA in Creative Writing from Bar Ilan University, and a BA from Oberlin College. Miriam is a 20-year resident of Israel, and a mother of three. You can find Miriam on Facebook and Twitter at @thelostkichen.

 

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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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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. Continue reading

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. Continue reading

From the AlzAuthors Blog: Florrie Munat Shares her Lewy Body Caregiving Story in “Be Brave”

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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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The Writing Life: Are You a Pantster or Plotster? How About a Hybrid?

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In writing circles, there’s much discussion as to whether one is a pantster or a plotster.

The pantster is the writer who has a general idea of where her story’s going and often allows it to take off in its own directions, where the characters dictate the scenes, dialogues, and plot twists. She’s basically writing from the seat of her pants, picking up details and action as the story evolves. It’s an undisciplined approach but many writers will say the uncertainty involved fuels and motivates them to see where the story goes.

The plotster takes a more disciplined approach, has the entire story mapped out in her head and on paper or her writing device. Her notes include elaborate outlines, character descriptions, back story, and more. Each scene, each chapter, is well planned. There is little room to run off on tangents or be spontaneous. Many of these writers will say this ensures they get the work done in a timely manner. They need structure to meet deadlines and achieve their goals.

Is one method better than the other? If you asked a hundred writers you’d get a hundred different answers. For me, a more hybrid approach seems to work. Continue reading