“The Story of AlzAuthors,” or “How 3 Daughters of Dementia Started a Global Community of Authors Sharing their Alzheimer’s & Dementia Caregiving Stories”

The Story of AlzAuthors

Join me as I tell the story of AlzAuthors, the global community of authors sharing their Alzheimer’s and dementia stories to light the way for others, on Friday, June 21st at 2 pm at Middletown Thrall Library, Middletown, New York. This is my fundraising and awareness effort for the Alzheimer’s Association’s The Longest Day, an annual event. You can read more about my personal Alzheimer’s story on my Longest Day Participant Page. 

eReader BHAfter publication of my novel Blue Hydrangeas, an Alzheimer’s love story,  I reached out to two other authors I met online who also published books on this deeply stigmatized subject. What happened next was totally unexpected: We created a movement that includes 200+ authors, a website, bookstore, anthologies, community outreach, and more. Our mission: To bring carefully vetted books and blogs to caregivers and others concerned about Alzheimer’s and dementia and to break through the silence that often accompanies these diseases.

Sharing our stories makes us strong, but sadly too many of those with dementia and their loved ones caring for them are isolated, as shame and stigma often prevent them from disclosing their diagnosis. My  presentation will include a discussion on the power of telling our stories to make change – personally, globally, and legislatively – and how those overcoming or facing dementia and its caregiving can tell their own stories. Continue reading

Suzanne Bottum-Jones Explains Dementia to Kids in “Nice to Meet You… Again”

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By Suzanne Bottum-Jones, RN

Nice To Meet You… Again is the representation of years of sitting with families as a Registered Nurse, holding their hands, witnessing their frustrations, and sharing in their journeys through dementia. After fifteen years of wishing for a tool to help families learn strategies and see hope for their interactions, my father developed dementia, and I decided I needed to move my teaching outside of myself as the deliverer and multiply the effects that I, alone, could not make.  As I prepped for this, I remembered the countless families that made their final decision to stop visiting their loved ones because it was so upsetting to see the changes in their loved one and because of their fear of how these visits were affecting their children. This became my mission: to develop a tool that would help families change these moments of frustration by giving them the tools to help “see” a different expectation and journey, and change the flavor of their interactions.

bottum jones coverIn the short time the book has been available I have been blessed with  many responses from families of how they wished they would have had this resource when they were in this journey, or how it is currently changing their journeys and giving them back their joy with their loved one.  Professionals and family caregivers have stated they carry the book with them because hardly a day goes by in which someone they know or meet shares their journey of dementia. By offering this book, they state that they feel like they can finally do more then just say, “I understand;” in addition they can offer hope. Continue reading

AlzAuthor Daniel Kenner Shares How He Used an Oral History Project to Preserve His Parents’ Life Stories & Legacies

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By Daniel Kenner

After many long months of exhaustive family struggles, cognitive and behavior changes, and a lengthy process of medical evaluations and tests, my dad, Buddy, received the devastating diagnosis of Frontotemporal Lobe Dementia (FTD). It was Valentine’s Day, 2013. FTD is a rare neurological disease that affects personality and social behavior, speech and language comprehension, and executive functions involved in reasoning, decision-making, and planning. Never to be outdone, my mom, Maureen, always the fierce competitor, was diagnosed with Stage 4 colon cancer only four months later.

That year, my best friend’s parents died in a terrible plane crash and that sudden tragedy struck me in such a profound way. “I am going to lose my mother and my father,” I remember thinking, “but I still have time.” I don’t know which is worse: losing parents instantly or watching them slowly deteriorate, but I knew I wouldn’t squander the chance to say goodbye.

Dad was a natural storyteller, and through that he became my favorite story to tell. He was my hero. The highest compliment I can give of my dad was he had a son that idolized him. Everything he loved I was determined to love just as much or more: Bob Dylan, Lenny Bruce, Marlon Brando, absurdist theater, and the San Francisco 49ers. But dementia made him quiet and apathetic; he no longer expressed an interest in the things we used to do together. Continue reading

AlzAuthor Leah Stanley on Surviving Double Dementia Duty: A Story About Two Loved Ones Needing Care Simultaneously

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By Leah Stanley

I began writing Goodnight, Sweet: A Caregiver’s Long Goodbye in 2001. For me, committing the story to print was a cathartic experience following the deaths of my grandparents two years earlier. Edward Meade had battled an unspecified dementia while his wife Clara was afflicted with Alzheimer’s. As their designated caregiver, a role which I had gladly—and sorrowfully—taken on, I walked alongside them down that tedious road while loving, caring for, and protecting them.

Every afternoon when my then almost two-year-old son would go down for his nap, I would sit at my computer and write diligently, reliving the moments which, when put together, told the full story; I would laugh and I would cry as I remembered the decisions and recalled the words, reactions and facial expressions of those around me. I felt it was imperative that my experience as an Alzheimer’s/dementia caregiver not fade away with time, but that it be shared because I came to realize there were so many others following that same winding trail I’d walked, and I remembered how I was always encouraged when I could talk with someone who had been engulfed in a similar circumstance. I believe it’s one of the ways God designed us, being able to meet on the common ground of shared events. Continue reading

AlzAuthor Julie Bigham Shares How to Create Joy Filled Visits in the Midst of Alzheimer’s

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By Julie Bigham

My passion for bringing joy to the lives of seniors began at an early age, when my gramps encouraged me to entertain at his Senior Center. Fifteen minutes of stand up, egged on by applause from the crowd, ignited a spark of love in my heart for the older generation. Thirty plus years later that spark has erupted into a full flame of passion for providing support to professional and family caregivers caring for loved ones living with Alzheimer’s.

Through my work experience as an activity professional, it became evident to me that providing high quality, compassionate care for those living with Alzheimer’s takes a village, and family engagement in any setting is vital. Families can become overwhelmed with doctor visits, medication changes, increasing care needs, and care plan meetings, not to mention the emotional stress. With everything they juggle, families can forget the importance of spending quality time having fun with their loved one, often spiraling into isolation and depression. Continue reading

Krysten Lindsay Hager Writes Dementia -Themed Fiction for Young Adult Readers

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By Krysten Lindsay Hager

I started writing Dating the It Guy as a romance between a high school girl and the popular senior son of a senator, but I also wanted to include a storyline of having the main character deal with her grandpa’s recent dementia diagnosis. My grandfather moved in with us when I was Emme’s age because he could no longer live on his own. I decided to write about it years later just to get it out. In fact the first time I read a section of it to my mother, she left the room because it was too much to deal with. It’s tough to look back at memories like that sometimes.

So I finished the book, but set it aside for a while. Then two years ago, there was a pitch contest online and I decided to see if there would be any interest in this story. My publisher said she’d be interested in seeing it. At that time I had only published middle grade novels with her and wasn’t sure she’d want a young adult novel from me—after all there are a lot of publishers who aren’t fond of genre hopping. I remember when I sent it to my publisher I mentioned I hoped that this book would help someone else. My publisher wrote, “have I told you I love your writing?” Continue reading

“Life on Planet Alz” – An Alzheimer’s Caregiver Shares His Story

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By Jack S. Cohen

This is a true story about coping with my beloved wife’s devastating diagnosis of Alzheimer’s disease (AD), the terrible scourge of our age.  In general, people are living longer and diseases of the aged are becoming more prevalent. The major neurological disease of the aged is in fact AD. Whenever a person is diagnosed with AD, their spouse automatically becomes their primary carer and unwittingly also becomes a prisoner of the disease.  

There have been many excellent books and descriptions of AD and its ravages upon the minds and lives of people, so why write another account?  Each case of AD is unique and two novel aspects of this account are: the focus on the way that AD imprisons both the patient and their spouse in a constant process of deterioration, and the inclusion of an almost daily journal describing raw incidents that can be enlightening for the reader, and especially for the spouse of an AD sufferer.  This illustrates the vicissitudes and the almost total preoccupation that this disease encompasses. Continue reading

AlzAuthor Bobbi Carducci Offers Hope to Alzheimer’s & Dementia Caregivers in a New Anthology of Inspiring Stories

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By Bobbi Carducci

Caregivers very often become isolated as the needs of the one-in-care progress. Even well-intentioned family and friends begin to drift away, leaving caregivers wondering if anyone understands what their life has become.

I know that feeling very well. A caregiver for my father-in-law, Rodger, for seven years, I often felt as if the rest of the world had moved on to work and family life, believing my days were easy.

Some questioned how hard could it be to stay at home and cook his meals and take him to the doctor now and then. Surely I exaggerated the difficulty.    Continue reading

AlzAuthor Rosalys Peel Shares her Alzheimer’s Caregiver Story in “Mike & Me”

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By Rosalys Peel

Every two minutes someone in America is diagnosed with Alzheimer’s. Most will face this discouraging illness with their wife, husband or partner at their side. And yet the typical “Alzheimer’s couple” has no idea how to make the most of what lies ahead.

This is the predicament my loving husband Michael and I found ourselves in when we discovered that Mike had been diagnosed with Alzheimer’s. Over 35-plus years of marriage we had always dealt with problems together. But now we were advised to start preparing ourselves for the day when Mike would surely be moved from our home to an outside care facility. We simply weren’t ready to accept that. 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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