When coping with Alzheimer’s disease, it’s easy to feel alone. The disease can be isolating. Not talked about as often as other ailments, there’s a stigma associated with losing memories, a certain shame. There shouldn’t be. It’s as uncontrollable as cancer, and yet there’s a shroud of silence that surrounds it. This silence leads to a denial of symptoms. Which may be why, according to a 2006 study by the Alzheimer’s Foundation of America (AFA), a diagnosis of Alzheimer’s is delayed an average of 27.8 months after symptoms appear.
Healing comes from eliminating this silence. Talking enables us to cope, helping us realize
that our challenges are not unique. Our guilt is not ours alone. Our pain is shared. Which is why stories are important. Stories from those coping with the disease themselves. Stories from caregivers. Stories from those who have been forgotten.
Over the past several months, four other authors from across the country and myself have crossed paths, all of us affected in some way by Alzheimer’s disease/dementia. Two of us watched both our parents’ memories disappear. One of us is a nurse who was caregiver for those affected. Another, a granddaughter who was forgotten by her beloved grandpa and the other of us is experiencing the disease himself.
For the month of November, the 5 of us have joined together in recognition of both National Caregiver Appreciation Month and National Alzheimer’s Disease Awareness Month. Our books were written with a common goal: To make a difference. We hope that our words might make the pathway of others traveling this road a little less painful and lonely. May one of these books speak to your experience.
Greg O’Brien, On Pluto: Inside the Mind of Alzheimer’s, a memoir
Alzheimer’s is a death in slow motion. For close to ten years, writer Greg O’Brien, diagnosed with Early-Onset Alzheimer’s, has chronicled its progression as an embedded reporter inside the mind of this monster of a disease that is akin to having a sliver of your brain shaved off every day.
Taking detailed notes and working off cognitive reserve, O’Brien offers an illuminating blueprint of strategies, faith, and humor needed to fight this disease, a day-to-day focus on living with Alzheimer’s, not dying with it— a hope that all is not lost when it appears to be.
About the Author
Greg O’Brien has more than 35 years of newspaper and magazine experience as a writer, editor, investigative reporter, and publisher. Over the years, he has contributed to, among other publications, the Associated Press, UPI, USA Today, Arizona Republic, Boston Herald American, Boston Metro, New York Metro, Philadelphia Metro, Providence Journal, Cape Cod Times, Boston Irish Reporter, and Boston Magazine, where he was senior writer. He is former editor and publisher of the Cape Codder and Register newspapers, former editor of Cape Cod Life, and was a founding managing director of Community Newspaper Company in Boston. He is the editor/author of several books, has published 17 books by other writers through his publishing affiliate Codfish Press, has written/produced documentaries, and has been a scriptwriter. O’Brien is the editor and president of Stony Brook Group located on Cape Cod in Brewster, MA, through which he runs local, regional, and national political and corporate communication strategy campaigns. He and his wife Mary Catherine have three children: Brendan, Colleen, and Conor.
Purchase On Pluto
Shannon Wiersbitzky, What Flowers Remember, fiction
“Most folks probably think gardens only get tended when they’re blooming. But most folks would be wrong. According to the almanac, a proper gardener does something every single month. Old Red Clancy was definitely a proper gardener. That’s why I enrolled myself in the Clancy School of Gardening. If I was going to learn about flowers, I wanted to learn from the best.” Delia and Old Red Clancy make quite a pair. He has the know-how and she has the get-up-and-go. When they dream up a seed- and flower-selling business, well, look out, Tucker’s Ferry, because here they come. But something is happening to Old Red. And the doctors say he can’t be cured. He’s forgetting places and names and getting cranky for no reason. As his condition worsens, Delia takes it upon herself to save as many memories as she can. Her mission is to gather Old Red’s stories so that no one will forget, and she corrals everybody in town to help her. What Flowers Remember is a story of love and loss, of a young girl coming to understand that even when people die, they live on in our minds, our hearts, and our stories.
About the Author Shannon Wiersbitzky is an author of children’s fiction, a marketing executive for one of the world’s largest investment firms, a mother of two boys, and a believer that every person can make a positive difference in the world.
Purchase What Flowers Remember
Jean Lee, Alzheimer’s Daughter, a memoir
What would you do if both parents were diagnosed with Alzheimer’s? At the time of their diagnosis, Ed Church struggles to his feet, yelling, “How dare you use the A. word with me,” while Ibby wags her finger at the doctor scolding, “Shame on you.” They defend each other, Ibby by asserting, “We’re not leaving our home,” and Ed reassuring, “We’re just fine.” About his driving Ed states, “I’m an excellent driver, I’ve never had an accident.” After Rosie moves them to assisted living, convinced they are on a second honeymoon, they break the news, “We’ve decided not to have more children.” In the late stages, they politely shake Rosie’s hand, inquiring, “Now, who are you?” In Alzheimer’s Daughter readers journey with the author from her first suspicions that something is awry to a decade later as she is honored to hold Ed and Ibby’s hands as they draw their last breaths.
About the Author Jean Lee wrote lesson plans for 22 years as an elementary school teacher. She had no aspirations to write a book, however when both parents were diagnosed on the same day with Alzheimer’s, her journey as their caregiver poured out on paper. Her memoir, Alzheimer’s Daughter is written with wincing honesty about the cruel effects of the disease, but a WWII love story held together by faith and family is contained within the pages.
Purchase Alzheimer’s Daughter
Marianne Sciucco, Blue Hydrangeas, an Alzheimer’s love story, fiction
What if the person who knew you best and loved you most forgot your face, and couldn’t remember your name? A care facility is everyone’s solution for what to do about Sara, but her husband Jack can’t bear to live without her. He is committed to saving his marriage, his wife, and their life together from the devastation of Alzheimer’s disease. He and Sara retired years ago to the house of their dreams and operated it as a Cape Cod bed and breakfast named Blue Hydrangeas. Jack has made an impossible promise: He and Sara will stay together in their beautiful home no matter what the disease brings. However, after nine years of selfless caregiving complicated by her progressing Alzheimer’s and his own failing heart, he finally admits he can no longer care for her at home. With reluctance, he arranges to admit her to an assisted living facility. But on the day of admission, Sara is having one of her few good days and he is unable to follow through. Instead, he takes them on an impulsive journey to confront their past and reclaim their future. In the end, he realizes that staying together at any cost is what truly matters.
About the Author Marianne Sciucco is not a nurse who writes but a writer who happens to be a nurse. A lover of words and books, she dreamed of becoming an author when she grew up but became a nurse to avoid poverty. She later brought her two passions together and writes about the intricate lives of people struggling with health and family issues. A native Bostonian, Marianne lives in New York’s Hudson Valley, and when not writing works as a campus nurse at a community college.
Purchase Blue Hydrangeas
Vicki Tapia, Somebody Stole My Iron:
A Family Memoir of Dementia
“I wrote my story to offer hope to others whose lives have been intimately affected by this dreadful disease, to reassure them that they’re not alone.” How would you cope if your loved one’s mind gradually slipped away? Navigating the waters of dementia can be frightening, unleashing a myriad of emotions for everyone involved, precipitating anxiety and grief, anger and frustration, extreme sadness and feelings of hopelessness. After Vicki’s mother was diagnosed with Alzheimer’s disease, followed closely by her father with Parkinson’s disease-related dementia, she struggled to find practical, helpful information to light her way. Somebody Stole My Iron began as a diary to help her cope, but emerged as a road map for others. It offers a glimpse into her family’s life as they rode the waves of dementia, sometimes sailing, other times capsizing. This engaging memoir offers useful information from experts within the field of Alzheimer’s research, personal lessons the author learned along the way, and ideas/tips for managing the day-to-day ups and downs of dementia. Somebody Stole My Iron chronicles the tenacity of Vicki’s mother as she fought her way through the tangled and bewildering labyrinth called dementia. Above all, it is a story of holding on and ultimately learning to let go, transcending the pain and turmoil to discover both an abiding love and a tender compassion.
About the Author Vicki Tapia, long-time lactation consultant, found her energies redirected to the other end of life when both parents were diagnosed with dementia. The mother of 3 grown children and 8 grandchildren, the author lives with her husband and Mini-Schnauzer in south central Montana.
Purchase Somebody Stole My Iron