by Irene Frances Olson, AlzAuthors Global Outreach Coordinator
The quickest method to connect with someone is the virtual, social media connection with which we are all familiar. But unless a person crosses the precipice from virtual to real, there is no way to truly understand the benefit of in-person relationships.
That was the case for the AlzAuthors Management Team when all six of us convened at the 2018 National Caregiving Conference in Chicago. The team was generously gifted with the opportunity to gather from the corners of the world from which we hail: the states of Washington, Montana, Ohio, North Carolina, and New York, and the Canadian province of Ontario. Meeting for the first time was a highly anticipated emotional event that proved beyond beneficial to me. You think you know someone after spending months or years emailing, texting, and video-calling, but what I discovered is you can’t truly know a person until extended “facetime” occurs.
I met with as many conference attendees as I could and having done so, I came away concluding that community is everything. Like-minded individuals – at least 250 of them – gathered together for several days to feed the spirit, nourish the soul, and further the mission of being a support to the weary caregiver.
Regardless of which disease renders a person in need of care – Alzheimer’s, cancer, ALS, and the like – caregiver heroes need as much support as can be given. A powerful community goes a long way toward lessening a person’s burden, and as AlzAuthors has been known to say:
One can sing a lonely song, but we chose to form a choir and create harmony.
The AlzAuthors management team is pleased to announce the publication of Alzheimer’s and Dementia Caregiving Stories: 58 Authors Share their Inspiring Personal Experiences, Vol. 1. This poignant collection of stories grew out of the first year’s blog posts on AlzAuthors.com, from June 1, 2016 through May 31, 2017. Within its pages, you will be immersed in a world of writing about Alzheimer’s and dementia.
The contributing authors have all been touched by Alzheimer’s and dementia, whether they live with the disease, are caregivers, or simply care. They reveal the story behind their books, what made them sit down and painstakingly share their story, and what they have gained from doing so.
This year-long project was made possible through the international collaboration of seven women, all daughters of dementia, your AlzAuthors management team. We have worked tirelessly to find and vet resources – memoir, novels, nonfiction, poetry, children’s books, and blogs – to provide those living with dementia a friendly place to find the support and knowledge they need. We believe that by sharing our stories we open a dialogue that not only reduces the stigma surrounding a dementia diagnosis, but enlightens others to the reality that “I made it through. You can too.”
Heartfelt thanks go to our Special Projects Editor Jay Artale, author of A Turbulent Mind: A Poetry Collection of a Mother’s Journey with Alzheimer’s, who donated countless hours to the design and formatting of this beautiful book.
In early 2019, we will begin the process of creating Volume 2, which will consist of posts from June 1, 2017 through May 31, 2018.
This book would make a wonderful gift for a caregiver you may know who is in need of knowledge, support, and comfort. Please keep it in mind as you do your holiday shopping. It is currently available on Amazon in Kindle format. Purchase here. A paperback is in the works and should be published within the next week or two.
All proceeds from anthology sales will be used by AlzAuthors.comto maintain our site and promote our authors’ books.
When our mama was diagnosed with infiltrating pancreatic cancer and given three-to-six months to live, she was the sole caregiver for our 87-year-old father “Papa,” who was in the early stages of dementia. Over the next 13 years, my sister Diane, a pathologist, and I shared care of them from opposite coasts and opposing viewpoints, often engaging in hand-to-heart combat over what constitutes quality of life. Sisterly love turned to https://sisterlyshove.comin the new book we co-authored.
After hearing the news that Mama had pancreatic cancer, Diane proclaimed her “a goner.” But after she became dissatisfied with both the home care I arranged and the health care system in our hometown in North Carolina, Diane took Mama against doctor’s orders to live in her home in a California beach town. She quickly discovered that the wild card of having someone like Papa with dementia in the mix made cancer care and practicing medicine impossible for her.
Papa ping-ponged back to me in North Carolina and lived in a memory care facility I loved for five years.But after he broke both hips, Diane eldernapped him from the facility,quit practicing medicine, and doctored him by herself 24/7 for more than seven years at her home in California.
The story my sister and I tell in “Sisterly Shove” reflects a new kind of sibling rivalry among baby boomers: Which sister, or sometimes brother, is best willing and financially able to care for and make life-or-death decisions for elderly parents, especially in light of their own obligations to young children? Is it possible to share care among siblings, especially in a strong-willed and highly opinionated family like ours with a both a sister and brother who are doctors calling the shots long distance?
The Alzheimer’s Association says that 1 in 3 seniors now dies with Alzheimer’s or another dementia. In the case of Papa and his siblings, dementia snatched the memories and daily lives of 4 out of 5 of them. Since we are part of an extended family predisposed to living long lives, most of our cousins have also experienced Sisterly Shove. Since the book came out, we’ve learned that three once-close female cousins who all work in health care and battled over care of their mom have now been estranged for years.
We’ve also found that many of our readers have experienced similarly heart-wrenching family caregiving battles and can totally relate. Family relationships have clearly become an unintended casualty of the Alzheimer’s and dementia epidemic. We are working to share our story, not only in our book, but also in person at conferences and within caregiver support groups in order to help siblings work together in a spirit of compromise.
My co-author Diane went to medical school in the days when health care was a fee-for- service world. She believes that if we don’t support research and change our approaches to eldercare under the new value-based medicine model, we will pit one generation against the next and compromise our ability to be competitive in a global economy. That’s one perspective and hope for our society that the two of us certainly will not fight about.
About the Author
Malia Kline, the younger sister in “Sisterly Shove” is a copywriter who studied journalism at The University of North Carolina at Chapel Hill and was formerly a writer/producer at a CBS-affiliate TV station. She was also the scriptwriter on videos in the Duke Family Series. One of them, It’s Potty Time, was named “KidVid of the Year” by Roger Ebert and became available in nearly 700 libraries worldwide. Malia now owns her own copywriting business and shares her word-obsessed perspectives in MaliaMania, a comedic grammar blog. She lives in Charlotte, N.C. with her husband Steve and has one daughter who has followed in her sister’s footsteps as an M.D., recently starting her pediatric residency.
When the Unthinkable Becomes Inevitable: The Awful Dawn of Dementia
Up to this point in my life, most of my blogging has been for parents of adopted, foster, or special needs children. Back in 2002, when my husband and I first became foster parents (and later adoptive parents), we really had no idea what we were in for. Which was probably a good thing, because I’m not sure we would have had the courage to move forward with it, had we known.
Now, as I’m entering the sixth month of caring for my mother, a dementia patient, I’m realizing that this is a lot like that. Lots of dirty laundry and temper tantrums, interspersed with moments of sweetness and delight. The tumultuous relationship we had during my teen years is gone. These past six months have been the sweetest, yet in many ways also the hardest – for both of us. But even the hard times are not without their rewards. For instance, when my daughter is being her snarky teenage self, she will do for her “Mammy” what she would never do in a million years for “Mean Old Mom.”
Best of all, I don’t have to make those bi-monthly trips to Georgia to visit her in that godforsaken place (Grace House, my Aunt Fanny), where the residents sat slumped in the half-light like so much castaway furniture. She spent most of her time on her bed, exhausted from writing notebooks full of gibberish, trying to work out why she had been deprived of her freedom, her marriage, and most of her life. My sisters and I would take her out as often as we could from our respective homes in Indiana, Washington State, and New Hampshire (plus the youngest who lived nearby but was trying to balance the demands of caring for her family, a full-time job, and both my parents), but it grew harder and harder to bring her back to the facility. More than once I begged God to take her in her sleep. I was sure I knew where she was going, and it was an infinitely better place than this.
Finally, one day when I realized that there really wasn’t any reason for her to stay where she was, I broached the subject with my father, who readily agreed that Mom would be happier with me. Just before Thanksgiving, we decided – so she could go back by the end of Christmas if it didn’t work out.
But in my heart, I knew there was no going back. “How’d you like to come home with me, Mom?” Her dull expression brightened for just a moment. “They won’t let you take me,” she said. “The judge won’t let me go.”
Somewhere in her clouded mind sat a cantankerous old geezer who called the shots. “It’s okay, Mom. Dad said I could take you – and the Judge has no jurisdiction in Indiana.” And so, her friends all gathered to celebrate her 77th birthday on that last day before we left. “I’m so happy for your mom,” each of them said to me. “She’s going to be so much better off with you.” They gave her warm track suits to insulate her from the Indiana winters, and posted pictures and letters regularly both in the mail and on the private Facebook page where I keep everyone informed of her comings and goings.
Then we got on a plane and … she was free. It wasn’t like her old life, with the man she’d loved for more than fifty years. Instead of a spacious, well-kept home she had a room in the basement with a little half-bath near my office, and she struggled to climb a flight of stairs a couple of times each day.
But how she smiled. In photograph after photograph, her eyes alight as she once more made cookies, beat us at Scrabble, sang at birthday parties, and sported a pretty Easter dress. She had been given a second chance at life. And I was going to make the most of it, for as long as I could.
There’s still so much to learn, so much I’m still figuring out. But I decided I want to keep track of the steps along the journey, in case there was someone else out there who, like me, just needed someone who could say, convincingly, “Me, Too.” So, if that’s you, welcome. Pour yourself a cup of… well, whatever strikes your fancy. I won’t judge. And let’s take the time to encourage each other, in good days and bad. Because when the unthinkable becomes the inevitable, the steadying hand of friendship can make all the difference in the world.
About the Author
Heidi Hess Saxton and her mom, Sandy, live with Heidi’s husband Craig, their teenage children, and two energetic dogs in northern Indiana. In her spare time, Heidi is a writer and editor, and blogs as often as she can at “Life on the Road Less Traveled” (for adult caregivers), “Extraordinary Moms Network” (for parents of adopted and special needs children), and “Ask the Catholic Editor” (for non-fiction writers). Her latest book is Advent with Saint Teresa of Calcutta(Franciscan Media).
It’s our third anniversary and the admins at AlzAuthors are so excited! We have come so far since we first partnered in 2015 to help raise awareness of Alzheimer’s and dementia. Here are the highlights:
In 2016, we launched this website and have since featured 150 authors and their books, many written from the trenches, giving an up close and personal glimpse into the lives of Alzheimer’s caregivers and the disease. Upcoming blog posts are scheduled into November!
We have gathered an active army of advocates for those living with the dementias who work to break stigmas attached to the diseases via social media, online and in-person events.
We have been interviewed on podcasts and written guest posts for several other caregiver forums, including Being Patient, eCare Diary, and BlipIQ.
In September, a selection of our books and two of our authors will travel to Alaska on board the Alzheimer’s and Dementia-Friendly Cruise & Conference on Holland America. This cruise is designed for caregivers and their family members living with early-stage Alzheimer’s disease. AlzAuthors is sponsoring a Book Circle, and many of our books will be raffled off to attendees.
We are currently hard at work creating our first Anthology, which will include posts from the first year of our blog.
Whew! We have been busy! When Marianne, Jean, and Vicki first met to talk about cross-promoting their books and raising awareness of Alzheimer’s and dementia, they had no idea their efforts would have such an impact. With the addition of Kathryn Harrison and Ann Campanella, the ideas and energy are boundless.
To celebrate our achievements we’re hosting a sale and a raffle in conjunction with Alzheimer’s and Brain Awareness Month. Starting today through June 12 you can take advantage of this excellent opportunity to check out some of our books at reduced prices or FREE. We offer a variety of genres, from fiction, children’s, memoir, and non-fiction in digital, paperback/hardback, and audiobooks. Our books are written from a deep place of understanding, experience, knowledge, and love. May you find one – or two, or three! – to help guide you on your own dementia journey. And they make great gifts!
Note: Click on the book covers to visit the book’s Amazon.com page. Please check all prices before purchasing. AlzAuthors is not responsible for ensuring price reductions. All prices are in U.S. dollars. AlzAuthors is an Amazon Affiliate and may receive a small sales commission to assist in maintaining the website.
Don’t forget to enter our RAFFLE, where one lucky winner will win a collection of books from AlzAuthors. To enter, click here NOW!
Caring for an elderly parent can be extremely challenging. The role reversal involved is emotionally and intellectually demanding, and many caregivers find themselves unprepared to undertake such a difficult task. In Trading Places: Becoming My Mother’s Mother,author Sandra Bullock Smith shares her personal experiences spending ten years caring for her ailing mother. This heartfelt look at the trials and tribulations of that decade offers powerful insight and encouragement for anyone entering into a similar period of life. Smith’s touching stories share the heartbreaking, and sometimes comical, moments she experienced while providing assistance to her aging parent—and how they mirrored similar events from her own childhood. In a very real sense, the two women traded places. Smith found herself uttering phrases she heard all too often as a child, such as, “Don’t give your food to the dog” and, “You’ve had enough sugar today.” Smith began jotting down the things she said, and thus this charming book was born. Filled with respect, compassion, and love, this uplifting and amusing memoir is for anyone involved in elder care or who may face the role in the future.
Somebody Stole My Iron: a Family Memoir of Dementia,by Vicki Tapia, Kindle .99
Navigating the waters of dementia can be frightening, unleashing a myriad of emotions for everyone involved. After Vicki Tapia’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 informtion from experts within the field of Alzheimer’s research, personal lessons the author learned along the way, and ideas and tips for managing the day-to-day ups and downs of dementia.
Role Reversal How to Take Care of Yourself and Your Aging Parents by Iris Waichler, MSW, LCSW, $10 paperback
Designed to help caregivers understand how to cope with and overcome the overwhelming challenges that arise while caregiving for a loved one—especially an aging parent—Role Reversal is a comprehensive guide to navigating the enormous daily challenges faced by caregivers. In these pages, Waichler blends her personal experience caring for her beloved father with her forty years of expertise as a patient advocate and clinical social worker. The result is a book offering invaluable information on topics ranging from estate planning to grief and anger to building a support network and finding the right level of care for your elderly parent.
Weeds in Nana’s Garden, children’s fiction by Kathryn Harrison,
Hardcover 30% off
A young girl and her Nana hold a special bond that blooms in the surroundings of Nana’s magical garden. Then one day, the girl finds many weeds in the garden. She soon discovers that her beloved Nana has Alzheimer’s Disease; an illness that affects an adult brain with tangles that get in the way of thoughts, kind of like how weeds get in the way of flowers. As time passes, the weeds grow thicker and her Nana declines, but the girl accepts the difficult changes with love, and learns to take-over as the magical garden’s caregiver. Extending from the experience of caring for her mother, artist Kathryn Harrison has created this poignant story with rich illustrations to candidly explore dementia diseases, while demonstrating the power of love. It is a journey that will cultivate understanding and touch your heart. After the story, a useful Question and Answer section is included. 20% of the proceeds from the purchase of this book will be donated to the Alzheimer Society of Canada. The Alzheimer Society is Canada’s leading health charity for people living with Alzheimer’s disease and other dementias.
Alzheimer’s Daughter, memoir by Jean Lee, Kindle .99
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 protect each other, Ibby by asserting, “We’re not leaving our home,” and Ed reassuring, “We’re just fine.” About his driving Ed defends, “I’m an excellent driver, I’ve never had an accident.” When their daughter, Rosie, finds dings in Ed’s car, he dismisses, “Someone must have bumped into me.” 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 Daughterreaders journey with Rosie Church from her first suspicions that something is awry to nearly a decade later as she is honored to hold Ed and Ibby’s hands when they draw their final breaths.
Blue Hydrangeas, an Alzheimer’s love story, fiction by Marianne Sciucco, Kindle .99, paperback 9.99
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.
Family caregivers are oftentimes ruthlessly challenged by uninvolved family members who are quick to condemn, but reticent to offer assistance. Such is the case for Colleen Strand, a widow who recently found her own footing who takes on the task of caring for her father, Patrick Quinn, recently diagnosed with Alzheimer’s disease. Her older brother, Jonathan, criticizes Colleen at every turn and verbally abuses the father when he has the gall to exhibit symptoms of his disease. In short, Jonathan travels down the road of denial, leaving Colleen to deal with all matters regarding their father’s care. Connected tenuously to a father who barely remembers her and a brother who has become an enigma, Colleen faces the moving target that is Alzheimer’s disease, determined to clothe her father with the dignity he deserves, while capturing the far too fleeting moments of time with him.
The Reluctant Caregiver: Missives from the Caregiving Minefields, memoir by Joy Johnston, Kindle .99, paperback 8.95
One moment, digital journalist Joy Johnston is a cynical workaholic with an underwater mortgage. The next moment, she faces the responsibility of caring for her eccentric mother who’s battling colon cancer, just six months after her father’s death from Alzheimer’s. As an only child, she has no choice but to slap on the latex gloves, and get to know more about her mother — and herself — than she ever imagined possible. The road from reluctance to resilience is bumpy and splattered with bodily fluids, but it also offers unforgettable lessons. Who knew you could learn how to change a colostomy bag on YouTube, or that hospice nurses like telling dirty jokes? Peppered with snarky humor, vivid observations, and poignant honesty, this essay collection will resonate with anyone drafted into a family health crisis.
The Dementia Handbook: How to Provide Dementia Care at Home, by Judy Cornish, Kindle 2.99
Providing dementia care is profoundly stressful for families and caregivers. People with dementia or Alzheimer’s experience emotional distress, which leads to behavioral complications and the need for institutional care. However, if families and caregivers are able to identify the emotional needs caused by dementia and understand which skills are lost and which remain, they can lower the behavioral complications and their own stress. As the founder of the Dementia & Alzheimer’s Wellbeing Network® (DAWN), Judy Cornish approaches dementia care with clear and empathetic methods that not only improve the lives of the individuals with dementia but also of those caring for them. Dementia and Alzheimer’s are very personal and individual experiences—they vary from person to person. However, Cornish has identified a pattern in the abilities and disabilities of people living with dementia. Based on her findings, Cornish was able to develop methods for caregivers to ease emotional distress, which can quickly and safely resolve behavioral complications. Though people with dementia lose a sense of self, they are still the same person you always loved. Judy Cornish understands this. The Dementia Handbook: How to Provide Dementia Care at Home is the supportive guide you’ve been looking for as you walk alongside your loved one on this difficult—but potentially rewarding—new path.
Meet Me Where I Am, an Alzheimer’s Care Guide,by Mary Ann Drummond, Kindle .99
Caring for someone with Alzheimer’s disease requires an abundance of knowledge, patience and love. There are many obstacles along the way to discourage and overwhelm even the most well rounded individuals. “Meet Me Where I Am” is an essential resource for Alzheimer’s caregivers, designed to teach, enlighten and comfort while preparing for the journey ahead. Providing real life scenarios commonly encountered, along with solutions to some of the more difficult tasks, makes this book a “must read” for anyone seeking a better understanding of how to meet the needs of those suffering with Alzheimer’s disease.
My Mom My Hero: Alzheimer’s – A Mother and Daughter’s Bittersweet Journey,by Lisa Hirsch, Kindle, FREE June 6-10, then .99
When Lisa Hirsch found out her mother, Ruth, had been diagnosed with Alzheimer’s disease, her love, appreciation, and caring for her mother was transformed. To Lisa’s surprise, it has brought her and Ruth closer together than they’ve ever been. My Mom My Herotells the story of this mother-daughter relationship through a series of entries from Lisa’s internationally popular blog. Ultimately this is an uplifting and inspirational book for anyone who’s going through the difficult and often lonely ordeal of caring for a loved one who suffers from this devastating illness.
Motherhood: Lost and Found, memoir by Ann Campanella, Kindle, .99
Motherhood: Lost and Found takes the reader on a journey where Alzheimer’s disease and infertility intersect. At age 33, award-winning author and poet Ann Campanella returns to her home state of North Carolina ready to build a horse farm and start a family. Ann’s foundation is shaken when she experiences multiple miscarriages at the same time her mother spirals into Alzheimer’s. The author’s devotion to her family and her horse Crimson sustain her as her mother’s illness progresses and her own window of potential motherhood begins to close.
Save the Bones, memoir by Shannon O’Donnell, Kindle, 2.99, paperback 8.00
Second edition. Includes new material, the final chapter in the story of a mother and a daughter and Alzheimer’s. Maddening. Crazy-making. Frustrating. The dance that is Alzheimer’s is never quite mastered. The music changes often and the steps are irregular. This way? That way? Nothing is ever straightforward in the telling. This mother and daughter navigate the capricious ways of Alzheimer’s and discover new things along the way, including laughter that surprises and bonds them to shared history and memory.
Sometimes They Forget: Finding Hope in the Alzheimer’s Journey by RJ Thesman,Kindle 2.99
Caregivers of Alzheimer’s patients grieve through the Long Good-bye while trying to meet the needs of their loved ones. These caregivers need a nugget of hope – to know they are not alone. Sharing the authenticity of the caregivers’ challenges, Sometimes They Forgetpresents essays and meditations describing the caregiving battle within Alzheimer’s Disease. RJ Thesman writes from the viewpoint of a long-distance caregiver whose mother is disappearing within the shadows of the Long Goodbye. With this series of essays and meditations, Thesman presents tips for caregivers, personal family memories and the sacred space Alzheimer’s cannot touch. For a better understanding of the caregiving journey, explore these empathic stories about loved ones who sometimes forget.
Fractured Memories: Because Demented People Need Love, Too by Emily Page, Kindle 2.99, paperback 20.76 with coupon code AlzAuthors2018 via author’s website
In 2009, Emily Page’s father was diagnosed at the age of 65 with frontotemporal dementia, a form of dementia that strikes earlier and progresses more quickly than Alzheimer’s, and for which there is no treatment to slow the progression of the disease. Being so young, Page hadn’t had much experience with dementia, but she began documenting, in writing and art, her family’s heartbreaking and hilarious experiences. As a professional artist, she had often turned to art as a self-prescribed therapy to help deal with life’s trials. This battle was no different. She utilized the elephant as a symbol for dementia, and incorporated sheet music into the paintings because her dad had been a jazz musician. Eventually, Page created 40 paintings that are included in the book. She also began blogging about the range of issues that arose daily as the disease progressed, documenting everything from her own fear of getting dementia, to her dad’s transition to diapers (and the various places he opted to drop his drawers and just “go”), to combatting his compulsions like the need to “clean” the cars with steel wool, to an exploration of how he might have gotten the disease, to finding the right dementia care facility, to the best ways to make him giggle. Page approached the disease from the fresh viewpoint of a younger caregiver. As her blog following grew, so did the suggestions from readers that she turn the blog into a book. Page doesn’t shy away from the ugly, raw emotion of life with dementia, but she also looks for the laughter where it can be found. Rest assured, you will love her father as much as she does when the book is done, and perhaps gain some insight about how to cope with your own loved one’s dementia or how to support a caregiver.
Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof, by Susan Soesbe, Kindle 1.99, paperback 9.99
Sisters Claire and Susan have been noticing their independent, introverted mother is sort of… off. Discreet investigation reveals the appalling truth: Mom can’t find her way home, pay her bills or even get to the toilet anymore. The move to an assisted living facility only further highlights the many aspects of her life that have quietly fallen through the cracks. Assisted living doesn’t render enough assistance for people with advanced dementia, and Mom has never fit in anyway. There’s only one thing left to do: bring her home. But how can the sisters pull it off? The practical aspects of physical care turn out to be less difficult than the emotional challenges to love and honor. The author brings her Christian faith to bear on such questions as, How can I love this person who bears no resemblance to the woman who raised me? And, Do I really just want Mom to hurry up and die? Bringing Mom Homeis a wry, bittersweet, and occasionally humorous account of one woman’s determination to love her mother before it’s too late.
In her seventies, Peggy Bushy’s mother, Francesca, started telling unbelievable stories. She claimed that people were invading her home and trying to kill her. She also became anxious and reclusive. For several discouraging years, Bushy searched in vain for a reason for her mother’s behavior. Finally, Francesca was diagnosed with Lewy body dementia. Although it’s the third-most-common cause of dementia, Bushy was unable to find much information on the disease, and the medical community was frustratingly unhelpful. Lewy, Mom, and Me is the book that Bushy wished had been available when her mother was first diagnosed. It details her personal journey of discovery, with all its challenges and revelations, and is written in a compassionate, empathetic style that will comfort any reader dealing with a parent’s decline. Bushy explains how she learned to accept the changes in her mother and to support Francesca emotionally as she grappled with her frightening illness. She also describes what was involved in caring for her mother first at home, then in long-term care, and finally in hospice. Part memoir and part survival guide, this compelling testimony offers support and information for family caregivers of aging parents.
No Sad Songs, Young Adult Fiction by Frank Morelli, Kindle 2.99, paperback 10.39
Following a family tragedy, 18-year-old Gabe LoScuda suddenly finds himself thrust into the role of caregiver for his ailing grandfather. Between the shopping trips and the doctor visits with Grandpa, Gabe and his friend John try to salvage their senior year, meet girls, and make the varsity baseball team. It doesn’t take long for Gabe to realize that going to school and looking after a grandfather with Alzheimer’s is more work than he ever imagined. And when long-lost Uncle Nick appears on the scene, Gabe soon finds that living with Nick and Grandpa is like babysitting two grown men. Aside from John, the only person who truly understands Gabe is Sofia, a punk-rocking rebel he meets at the veteran’s hospital. When these three unlikely friends are faced with a serious dilemma, will they do what it takes to save Grandpa? If there’s a chance of preserving the final shreds of Grandpa’s dignity, Gabe may have to make the most gut-wrenching decision of his life—and there’s no way out.
To Helen with Love: A Memoir of a Daughter’s Caregiving Journey, by Linda Jenkins, Kindle 2.99, paperback 12.00
It was a role she never expected to fill, but Linda Jenkins was soon thrust into a life of unpredictable days, lonely nights, and searing grief. For eighteen years she watches her mother give more and more of herself to Alzheimer’s disease from the seat of primary caregiver. Nothing could prepare her for what this new path would entail: navigating insurance issues, the healthcare system, financial concerns, hospice, and a panel of doctors, nurses, and caregivers. To Helen with Loveis written with humility, faith, and love in the face of a dark and ravaging disease. She candidly addresses her fears, her doubts, and her grief as time ushers her through one obstacle after another. A practical and helpful memoir, the book is filled with resources, advice, encouragement, and hope; she finds humor and joy where it shines brightly through the fog and captures it all in her recollections of her mother’s last years. With insight on advocacy, best practice, and the emotional spectrum common among caregivers, Linda Jenkins offers information, support, and inspiration in her mother’s memory. Her faith was challenged in ways she could never have dreamed of, but with the love of God and her mother, she rose to the challenge and learned about herself, her family, and her faith.
“Cobwebs in my mind!” was how my mother depicted the disease that ravaged her brain. Mom was diagnosed with Alzheimer’s and vascular dementia in May 2000, after episodes of TIA’s and early signs of dementia. She was 82 years of age. This was a major turning point in the life of our family. For me, it was the birth of a challenging new creative phase. Continue reading →
According to Alzheimer’s International, globally, there are nearly 44 million people that have Alzheimer’s or a related dementia.
In America alone, there are 5.3 million living with Alzheimer’s disease. 74% of caregivers of people with Alzheimer’s disease and other dementias reported that they were “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver. Certainly these caregivers and their loved ones are in a health care crisis. Continue reading →
After five years in the making, writing this memoir has been one of the most intense endeavors I’ve ever taken on, but well worth it.
While I was writing this memoir I discovered how much pain I still had deep inside of me. Pain from some of the experiences. Pain from not knowing what or how to deal with dementia. Pain of not understanding what caregiving entails. Pain from dealing with the healthcare field. Finally, pain when it’s all over. Continue reading →
What motivates a writer to write a book? It could be to share a story, educate/help the reader, or to entertain. I wrote both my books to support readers, raise awareness for a growing issue, increase understanding, and also to personally cope.
Before becoming a twice-published book author, I was a former co-caregiver (working with my two sisters) for my own aging parents (Mom had Parkinson’s disease and Leukemia while Dad had Alzheimer’s disease). This was not a job I was Continue reading →
Nearly five years ago, after presenting at an Alzheimer’s caregiver conference, a seed was planted in my heart to write a children’s book about Alzheimer’s and dementia. When the conference was over one of the attendees came up to purchase one of my books. As she was leaving she asked if I could recommend a book to help her young child with the changes her family was experiencing since her mother was diagnosed with dementia. I was at a loss. I had been so focused on education for adults that I had not researched current literature for children. Continue reading →