Suddenly, five years ago, my world fell apart as my parents tumbled headfirst into old age. It was a pivotal time in my life. I was remarrying after a decade of being a single parent. My son was leaving the nest, starting college, while a special-needs stepson was landing unsteadily in my new nest. I was leaving my successful career at a high-powered advertising agency to start my own consulting business, which would allow me greater flexibility to care for my parents, my new family, and to watch over my son as he spread his wings into early adulthood. It seemed doable. I was living the life of my generation—Gen T—the Taffy Generation, because “sandwich” just doesn’t cut the mustard. My friends and I are pulled like saltwater taffy as we have children later, our parents live longer, and we blend families in non-traditional ways. We’ve long since quit believing in the myth of work-life balance.
I started writing about my journey into eldercare on Facebook in what I called #GeezerUpdates. The Facebook posts quickly gained traction and morphed into a blog at geezerstories.com and ultimately a book—my bittersweet memoir, Geezer Stories: The Care and Feeding of Old People.
There’s no how-to manual for taking care of old folks. We’re all flying blind here as our parents slide into their second childhoods. My book has a bite to it, with a backward glance at my own childhood. It’s a survival story about how to persevere in the face of inevitable hardship. It’s about choosing to age gracefully, despite the pain and the pathos. As my father, aka DooDaddy, famously said, “Growing old is not for the faint of heart.”
Over the past five years, my second marriage failed, my business faltered, and my son lost his way, as I found myself torn apart by the seemingly endless demands of caregiving. I moved three times and changed jobs four times, ultimately ending up back with the agency I left five years ago. And I lost both my parents agonizingly to cancer, which they faced with courage and dignity. My son graduated from college and has become his own person. My life has come full circle.
One of the many blessings of this tumultuous time was my father holding court at my Geezer Stories launch party. He had read the book—which was not always kind to him—three times. He could no longer walk or stand or even sign his name. I had a stamp made of his iconic scrawling signature, which he gamely stamped on each copy as he shook hands and gregariously greeted his fans that afternoon at Union Ave Books. It was a triumph. We sold out. It was DooDaddy’s last public outing.
While my parents did not suffer specifically from Alzheimer’s, they experienced the many indignities of dementia, memory loss and all ilk of physical frailty and ailments. They lost their freedom, their mobility, their lucidity, their ability to eat, swallow and speak, but never their humanity. And they taught me the meaning of compassionate caregiving in the process. Geezer Stories is my story, and it is also theirs—of love and loss, of humor and humanity, in the context of family and the ties that bind us all.
The book has been well received, making several bestseller lists on Amazon and generating a groundswell of support from fellow Gen T caregivers, who have their own geezer stories to share. Caregiving comes in many forms, flawed and fragile, but ultimately beautiful. Hopefully, our parents did their best. Hopefully, we will do the same.
Bio: Laura Mansfield grew up in Knoxville, Tenn. surrounded by cats, books and good conversation. She graduated Phi Beta Kappa from the University of Tennessee with a bachelor’s degree in English and later an MBA in finance. Formerly a professor of advertising and public relations at UT, Laura has a flair for storytelling, which informs her work as a public relations manager for an advertising agency recognized by Fast Company as one of the World’s Most Innovative Companies. She’s also a certified yoga instructor and passionate yoga practitioner. Laura has one son, one dog and a cat named Richard Parker.
It’s AlzAuthors fourth anniversary and our team is so excited! We have come so far since we first partnered in 2015 to help raise awareness of Alzheimer’s and dementia. Here are some highlights:
In 2016 we launched this website and have since featured more than 200 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 December!
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 published an anthology of our first year’s posts in November, 2018, and will soon publish a second volume.
The full management team – working exclusively online since 2015 – met in person for the FIRST time in November, 2018 at the Caregiving.com National Conference in Chicago!
We partnered with the Kline Center for Dementia Support and Grandparenting Research to launch our first “Inspiration Collection” on board the Connecting Circles of Care and Building Bridges of Hope Caribbean Cruise for Caregivers.
Our authors are donating books to our Traveling Libraries in North Carolina, Ohio, and New York which go on the road to Alzheimer’s and dementia events and into the hands of needy caregivers.
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 creative director Kathryn Harrison, editorial expert Ann Campanella, and all-around dynamo Irene Olson the achievements, 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 27 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!
And now, the books:
Alzheimer’s and Dementia Caregiving Stories: 58 Authors Share Their Inspiring Personal Experiences (An AlzAuthors Anthology, Book 1) Within these pages you will be immersed in a world of writing about Alzheimer’s and dementia gathered together by the team at AlzAuthors.com. The editors of this anthology 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. Fifty-eight authors who have “walked the walk” reveal the stories behind their books, what made them sit down and painstakingly share their stories, and what they have gained from doing so. We believe that when we share our stories we open a dialogue that not only reduces the stigma surrounding a dementia diagnosis but enlightens others to the reality of: “I made it through. You can too.” Kindle reg. price 4.99/sale price 1.99; Paperback reg. price 14.99/sale price 13.99.
Alzheimer’s Trippin’ with George: Diagnosis to Discovery in 10,000 Miles by Susan Straley What would you do if you learned that your spouse or partner has progressive dementia, possibly Alzheimer’s disease? This is the brutally honest journal of one spouse and reluctant caregiver that “ran for the hills.” Of course she took her husband George along. What challenges did Susan encounter? How can she enjoy the present — a journey across the U.S.A. – while worrying about the future? How do she and George deal with his increasing dementia symptoms? And the biggest question of all, after 40 years together, can they remain married and loving through it all? Travel along with George and Susan. You will learn, you will laugh and maybe shed a tear as you too go Alzheimer’s Trippin’ with George. A portion of the author’s proceeds for each sale (paperback or ebook) will be donated to Caregiver Assistance. Don’t let the number of pages scare you. There are LOTS of pictures to help tell the story. The Kindle version shows the pictures in color on your tablet or phone. Kindle reg. price 7.99/ sale price 2.99; Paperback reg. price 18.87/ sale price 15.00.
Memory’s Last Breath: Field Notes on My Dementia by Gerda Saunders
NAMED A BEST BOOK OF 2017 BY NPR
Based on the “field notes” she keeps in her journal, Memory’s Last Breath is Gerda Saunders’ astonishing window into a life distorted by dementia. She writes about shopping trips cut short by unintentional shoplifting, car journeys derailed when she loses her bearings, and the embarrassment of forgetting what she has just said to a room of colleagues. Coping with the complications of losing short-term memory, Saunders, a former university professor, nonetheless embarks on a personal investigation of the brain and its mysteries, examining science and literature, and immersing herself in vivid memories of her childhood in South Africa. Kindle reg. price 9.99/sale price 2.99.
I Smile For Grandpa by Jaclyn Guennette, illustrated by Kathryn Harrison
Discover the heartwarming relationship between Grandpa and his Little Buddy in this touching book. When Grandpa is diagnosed with a dementia disease, Little Buddy realizes playing soccer together won’t quite be the same. But, while the activities that Grandpa can do are changing, there is still much fun to be had. In fact, spending time with each other is as special as ever! Using delightful and tender illustrations, dementia is compassionately explored through the innocent eyes of a child to create a greater understanding of the disease. Tips for speaking with your child as well as a useful Q&A are also included to enhance learning. *A portion of profits from 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. Thank you for making a difference. Kindle reg. price 4.99/FREE through 6/25.
What Flies Away by Ann Campanella
What Flies Away tells the story in poetry of the author’s mother’s descent into dementia, her father’s sudden death and the miracle of her daughter’s birth. Two poems from the collection received the Poet Laureate Award, the highest honor of the North Carolina Poetry Society. Anthony S. Abbott says, “What Flies Away is literally life itself, and the people and animals in it who we love. The mother is struck with Alzheimer’s, the father dies, a beloved horse is put down, the narrator turns forty and feels her own life flying away, and then a baby is born, a miraculous red-headed girl who gives life back not only to the parents but to her grandmother, and of course, to the reader. We are riveted to these poems, as step by step we experience the loss, the grief, the mourning, and then the astounding resurrection. It’s a book to read and read again.” Kindle reg. price 2.99/sale price 0.99.
Alzheimer’s: Beyond Caregiving by Miki Klocke
You will feel all alone. You will be lost and confused, but there is an ever growing community at your side. Your experiences are unique, struggles are all consuming. Your tribe of caregivers understands. There is no time for yourself. But you can accept offers of help and learn to ask for what you need as you find your footing on this journey. Beyond the sorrow and grief and loss, you’ll begin to see glimpses of pure love. Paperback reg. price 12.99/sale price 9.99.
Competing with the Star by Krysten Lindsay Hager
Hadley Daniels’s life seems perfect… Before the beginning of sophomore year of high school, Hadley and her family move to a beautiful beach town, where she makes amazing new friends and lands the boyfriend of her dreams–Nick Jenkins. He’s the kind of guy every girl swoons over, and it isn’t long until Hadley discovers some are still swooning. A famous ex-girlfriend makes matters more complicated… After some time dating, Hadley and Nick form a deep bond. But insecurity sets in when Hadley discovers her boyfriend once had a huge crush on her friend–who just happens to be the beautiful former teen TV star, Simone Hendrickson. The past is the past–or so they say… Hadley confronts Nick, who confesses about his history with Simone. Though he claims to only have eyes for Hadley now, it’s hard to believe–especially when she’s blindsided with the news that Nick and Simone kissed after school. Now Hadley must determine who is telling the truth. Love, betrayal, friendship…who needs soap opera drama when you’re busy competing with a star? This Young Adult novel contains a sub-theme of a grandparent with dementia. Kindle sale price .99.
Nice to Meet You.. Again: Empowering Children to Find Joy and Understanding in Loved Ones with Dementia by Suzanne Bottum-Jones, illustrated by Aaron Boyd
“No! No!” shouted Ollie, “I don’t want to go in there! That’s not my grandpa; he doesn’t even know who I am anymore.” So begins the beautiful journey of a little boy who transitions from being scared and frustrated that his grandpa, and best friend, does not know him anymore, to a boy who learns what HE can do to reconnect with his grandpa who is living with dementia. This unforgettable story takes readers through a range of emotions, from sadness to hope, as Ollie learns how to better understand the effects of dementia experienced by his grandpa and what he can do to help hold on to his relationship and enjoy their time together. This story is a lesson for children and adults to learn to accept a loved one experiencing dementia and to celebrate the joy in the interactions they still experience together. Hardcover reg. price 17.95/sale price 15.95.
Sisterly Shove: A Fight to the Death Against Pancreatic Cancer and Dementia by Malia Kline and Dr. Diane Stinson
A story of love outlasting memory. When Mama is diagnosed with pancreatic cancer and Papa has dementia, a humor writer and her serious-as-a-heart-attack physician sister engage in hand-to-heart combat in a 13-year battle to do what’s best for the parents who were always there for them. Growing up, Malia and Diane always loved each other despite their differences. Dark straight hair vs. curly, light hair. A pleaser vs. a protester. A wallflower vs. a Governor’s School standout. But the two sisters don’t understand how truly differently they view life, death and the caregiving in between until middle age when their beloved parents are whittled away by disease and dementia. As they struggle to share caregiving from opposite coasts and conflicting mindsets, sisterly love changes to sisterly shove. Diane, a physician, proclaims Mama “a goner” when she is diagnosed with pancreatic cancer in North Carolina, but then takes her against doctor’s orders to her home in California to preserve the hope that she won’t really die. When Malia moves Papa into an Alzheimer’s assisted living facility in their hometown, Diane calls it “assisted dying” and eldernaps him to doctor him herself 24/7 instead of entrusting his life to Malia and institutional eldercare. Will the sister’s relationship be the biggest casualty in this story of love outliving memory? Or will the demon dementia that consumed Papa and all his siblings also take Diane and Malia away from each other at the most vulnerable stage of their lives? Kindle reg. price 6.99/sale price 3.99; Paperback reg. price 9.49/sale price 7.49.
Finishing Well: Finding the Joy in Dementia: A Practical and Sometimes Humorous Guide for the Journey by Senia Owensby
Does your loved one have dementia? Caring for my Mama through her decline felt like an uncharted wilderness. Resources were few and far between. There wasn’t a lot available in the way of guidance or help, but we were determined to bring as much joy as possible along the way in spite of the challenges. This is our story – actually, it’s Mama’s. If she could talk, she would assure us that despite every difficulty, she’s still in good shape for the shape she is in. May Mama’s story encourage and inspire you to find the joy in your own, unique journey. Kindle reg. price 4.99/sale price 0.99; Paperback reg. price 9.99/sale price 7.71.
Trading Places, Becoming My Mother’s Mother by Sandra Bullock Smith
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. Kindle reg price 2.99/ FREE through 6/25.
Somebody Stole My Iron: a Family Memoir of Dementia by Vicki Tapia
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 information 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. Kindle reg. price 3.99/sale price 0.99.
Weeds in Nana’s Garden: A heartfelt story of love that helps explain Alzheimer’s Disease and other dementias by Kathryn Harrison
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..
Here is Joan’s Story: When my father-in-law Bill was nearing the end of his life, I would visit him quite regularly. He had made the decision to stay in his own home until the end. Winters in Minnesota are long, cold and lonely, especially for someone who is afraid and/or unable to venture out. Being the dutiful daughter-in-law that I was, I felt compelled to make the 100-mile drive from Rochester to St. Paul to visit him. We would sit at his kitchen table, and I would tell him about what the kids were up to… and what I had been doing. His major topic of conversation was the rabbits he saw as he stared for hours out the back window of his house.
During this time, I shared with my mother how difficult visits with Bill were becoming. He had so little to share, and I wondered if the visits even mattered.
Not long after, Mom gave me a notebook filled with a list of questions. She suggested I try asking Bill some of these questions to make our visits more enjoyable. “Leave it on the counter,” she advised. “The grandchildren might appreciate using the questions.” I took the notebook over to Bill’s house and meant to get started the next time we visited. Unfortunately, that was the last time I spoke with Bill. And now he is gone, and so many questions remain unanswered.
Mom’s notebook filled with questions became the inspiration for If Only You Would Ask: A Guide to Spending Quality Time with the Elderly. Not long after Bill died, when Mom and I were together, we talked about Bill’s last months. We figured there must be thousands of elderly people, just like Bill, who would enjoy sharing their stories, if only someone asked them the right questions.
Initially, If Only You Would Ask was written as an enjoyable resource for anyone who spends time with the elderly, be they adult children, grandchildren, friends, clergy, therapists, volunteers and/or caregivers. What we have learned, however, is that this resource has great potential as a way to encourage enjoyable “trips down memory lane” with those suffering from Alzheimer’s and dementia. Some people with Alzheimer’s preserve their long-term memory. Consequently, they enjoy sharing stories from their past even though they might not recollect these conversations in the short term. Sometimes questions about “food” or “vacations” or “school days” will ignite a memory, creating a source of comfort and delight! All of the questions in If Only You Would Ask are open- ended. There are no right answers. People who struggle with memory loss will not experience the stress related to questions which require a specific response.
With 42 topics and over 400 questions, If Only You Would Ask provides a framework for tapping into memories that may not have been thought about or talked about for years! Since its release in late December, 2018, If Only You Would Ask has been featured on Mayo Clinic Radio and was one of the winners for innovative products at the 2018 National Caregiving Conference in Chicago. If Only You Would Ask has transformed conversations for many families. In fact, they look forward to their next visits!
Every person has stories to share, If Only You Would Ask!
About the Authors Joan Berger Bachman is extremely pleased and proud to be coauthoring a book with her mom! As a teenager, Joan recalls her mother’s advice: “When you are in a social situation, always make an effort to ask each person three questions. This shows that you are interested in what they have to say….” In other words, give people the opportunity to talk about themselves! Generally, people are pleased to share, and you will have deflected the attention from yourself! So, it comes as no real surprise that four decades later, she has coauthored a book filled with questions to promote quality conversations!
Joan resides with her husband John in Rochester, Minnesota. Proud mother of three grown children and grandmother to six, she is grateful for family, for health, and for friends who continue to enrich her life.
Eileen Opatz Berger graduated from the College of St. Benedict and the University of Wisconsin/River Falls. Presently she teaches English as a second language. In addition to her five children and their families, her foreign students have been the joy of her life. Favorite pastimes include travel, writing and tennis. She lives in White Bear Lake, Minnesota.
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.
In 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.
As I look back over the last 2 years, I am so glad I had the courage and support to do something new and scary, like write a book, in the hopes of affecting lives and making a difference. I am currently battling a rare and aggressive form of breast cancer, making me even more grateful for the opportunity to share what I have learned and my love for these families without needing to be physically there myself. My goals for this book are very humble. If I am able to shed the light of understanding compassion for people experiencing dementia and their families and therefore decrease, by even a few families, feelings of isolation and despair, I will consider this project a shining success. The best thing we can do is talk about the behaviors, symptoms and compounding effects of dementia on our families and society openly, to help engage our public in empathy for these issues. In this way we empower everyone and multiply our efforts towards moments of joy and love. I wish you peace, hope and understanding in your journey.
Suzanne Bottum-Jones is a Registered Nurse with over 15 years of experience working with the management of behaviors and psychological symptoms associated with dementia, brain injury, and other forms of cognitive impairment. She is a nationally recognized speaker, behavioral consultant, educator, and advocate who works to encourage health professionals and caregivers to include behavioral strategies designed to move beyond pharmacologic only interventions. Suzanne is currently involved in developing and piloting ABAIT (Agitated Behavioral Assessment and Intervention Tools), a software platform designed to merge with electronic medical records that assist health care professionals and caregivers to improve quality of life and health outcomes for dementia patients. She resides in rural Wisconsin with her family on a five-generation farm. She loves sharing the beauty of the farm with friends, caring for her family, and helping families experiencing difficulties with dementia. Her motto in life has been to live gently, love passionately, and to choose joy everyday.
I’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.
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.
This is a deeply tender story as it deals with my stepfather Fred’s dementia. My mother was always deathly afraid of Alzheimer’s and dementia because she watched it take her beloved older sister, Gilda. Mom, a devout, lifelong, old-school Catholic, literally prayed every day, “Please, God, don’t let me get Alzheimer’s.” Her prayers were answered because up until her last days she was as sharp as ever. But Alzheimer’s would strike in a different way, taking her beloved Fred. Funny, I never worried about him. I was too busy worrying about Mom. When I wasn’t looking, dementia swept in and took him from us: frontotemporal lobe, vascular, and Alzheimer’s, the doctor wrote in his report. Mom was shattered. She could not bear this diagnosis, and did not bear it well. This 90th birthday party was a bright spot in their dementia life, one of the very few they enjoyed after he was admitted to a memory care unit.
I did not set out to publish in this wildly popular series when I penned this story. I actually wrote it for a different anthology and it was rejected. Not one to dwell on disappointments, I tucked the story away. When I saw a post in a Facebook writers community that the Chicken Soup for the Soul folks were looking for stories, I pulled this one out, polished it off, and sent it on its way. It took months to learn it was accepted, and frankly, I’d forgotten all about it. What a wonderful surprise to get that acceptance letter.
Mom would be thrilled to know that not only did I get a story published in a Chicken Soup book (which she loved) but it was about her!
The book is a wonderful collection of stories and will make a terrific gift. It’s available on Amazon and where all books are sold.
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. Her debut novel Blue Hydrangeas, an Alzheimer’s love story, is a Kindle bestseller; IndieReader Approved; a BookWorks featured book; and a Library Journal Self-e Selection. Marianne has written a prequel to Blue Hydrangeas. Christmas at Blue Hydrangeas is a slice of life story from before Sara’s Alzheimer’s. She is currently working on another prequel, A Wedding at Blue Hydrangeas, also pre-Alzheimer’s. Marianne is a co-founder and admin of AlzAuthors. A native Bostonian, she lives in New York’s Hudson Valley, and, when not writing or teaching classes in independent publishing, works as a campus nurse at a community college.
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. To the outsider, it looked like he stopped caring.
Mom would go for chemo and when she’d come home he wouldn’t ask how her day was or how she was feeling. She constantly worried neither of them would be strong enough to keep their vows. The life they worked toward was not there; it had changed past the point of recognizing and the reality of what they retired to was obvious.
What would happen to Dad when something happened to her? What was going to happen to Mom when something happened to him?
But the silver lining was that the doctors had promised aggression and there was none of that. Dad was content and experienced joy. When we’d ask him what he liked about a situation or an event, his response always revolved around describing somebody’s smile.
So, for three years Mom continued to be Dad’s main caregiver and,
during that time, she completed sixty-three rounds of chemotherapy...Sixty-three rounds of chemotherapy.
There was an onslaught of doctors and nurses and family and friends and volunteers and neighbors who never said no and extended every possible resource to us.
I needed my own way to help, to keep me close, to feel protected. Not wanting to lose my parents’ voices, I planned and organized an oral history project for their thirtieth wedding anniversary. We recorded thirty hours of interviews and conversations. Room for Grace became my way to preserve their stories and their legacy.
The project prepared me for a life with them gone but, a life of peace and with no regrets.
Then, a week after Father’s Day, Dad slipped on the steps bringing up the laundry. He fell down six stairs onto hard basement concrete. The man we loved spent the last seven months of his life basically paralyzed with an incomplete spinal disorder. And, because they were soul mates on a timeline so interconnected, on August 10, my thirtieth birthday, the doctors recommended Mom to Hospice. She was out of options.
I spent the last fall and winter by their bedsides. It was so painful but when I was called to act, I did. I jumped in. Full speed ahead. Until the end, Dad was able to be the father that he wanted to be.
Tragedy showed me what kind of man I am, or at least, the potential of the man I can be. By participating fully, I left myself open to heartache, but also open to great joy and happiness and deep and meaningful connections. My patience, my humor, my work ethic, my love, all the traits a father would want for his son, brought out the best of my parents. I learned to never miss an opportunity to do something good for someone else. Room for Grace was a gift we shared together and it became my strength and my armor. It saved me countless times from heartache and desperation because I knew I would never lose them.
My parents are going to miss out on a lot of my life; I am going to have to find symbolic gestures and signs to fill that emptiness, but I know they were truly proud of me and that they had countless chances to watch me grow. I am so eager to share their story with you.
About the Author:
Daniel Kenner is an actor, playwright and co-author of Room for Grace. Through anecdotes and hard-earned lessons, a family tackles challenge after challenge and reframes daily struggles with a positive outlook allowing them to transcend and conquer mortal fears with dignity and room for grace. More information can be found at www.RoomForGrace.org. Room for Grace partners with different organizations and 10% of each book purchased will be donated. The first organization receiving donations is Eye to Eye which began in Maureen Kenner’s Room 4 classroom. Eye to Eye fulfills their mission by supporting and growing a network of youth mentoring programs run by and for those with learning differences. www.RoomForGrace.org https://www.facebook.com/Room4Grace https://www.instagram.com/silverbootimprints https://twitter.com/theDanielKenner
Surviving Double Dementia Duty: A Story About Two Loved Ones Needing Care Simultaneously
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.
Following the birth of my daughter in 2002, the manuscript was shelved for several years as I took on the role of full-time mom. By spring 2016 I began to sense it was time to re-enter the story-telling mode and finish the work I had started fourteen years earlier. Additionally, I was spurred on by the sheer number of people I encountered who were facing the same issues I’d dealt with myself. I think I was strangely astonished when I had to acknowledge the disease had not “died” with my grandparents; it had marched through the years with aggression, and a shocking number of people had been devastated by it.
The book details my entire experience from the moment I received the first phone call to settling their estate nearly four years later. I have consistently heard people say my writing is very transparent as I share the range of emotions which accompanied caring for my grandparents; several readers have stated they couldn’t put it down—encouraging words for any author to hear!
When the book was complete, I began hand-picking readers to endorse it—I chose a medical social worker, two former caregivers and a physical therapist. Their responses were overwhelmingly positive, and the medical social worker even said the book is an excellent resource for people who are anywhere on the path of providing care for a loved one. It is such a blessing to know my grandparents will be remembered, and our painful experience wading through Alzheimer’s and dementia may be able to guide others to the realization that there is hope, and caregivers do survive.
Goodnight, Sweet: A Caregiver’s Long Goodbye was released on March 1, 2019. Purchase an eBook or paperback copy on Amazonor at Barnes & Noble.
About the Author Leah Stanley was born in Memphis, Tennessee, where she grew up and attended college, meeting her husband, Chris, during their freshman year. She earned a bachelor’s degree in Journalism from the University of Memphis and has a background in corporate communications and freelance writing. She lives in Houston, Texas, with her husband, son, daughter, and their boxer/beagle rescue dog Brooke.
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.
While some family caregivers spend hours visiting a loved one, others hope to remember them as they were. Both situations are understandable, as people find different ways of coping with the stress that accompanies an Alzheimer’s diagnosis. For the benefit of both, I set out to create a product that can help families maximize the time they spend with a loved one to assure that visits are filled with positive interaction and fun, thus eliminating common feelings of guilt and sadness.
The Joy Filled Visits Kit, completed in 2015, is filled with tools I found most helpful in my career, and includes an easy-to-read manual. The kit helps families create a simple plan for each visit to keep their loved one engaged in the life of the family for as long as possible. At the encouragement of a librarian, I reformatted the kit into book form, Creating Joy Filled Visits in the Midst of Alzheimer’s, to give easier, more affordable access to the same helpful information to people all around the globe.
Using the book as a guide, Joy Filled Visits also offers a 4-session class for caregivers – walking participants through a review of Alzheimer’s, the symptoms, the challenges those symptoms can create for engagement, and tips for overcoming those challenges.
Here are reviews from a few participants: “The Joy Filled Visits program gives an encouraging, fresh approach filled with ideas to interact with your loved one in a fun, personal way.” “Having a new expectation and new set of tools to communicate with, has [given us] … much happier days.” “I took care of my mom for years and felt very lost as to how to help her. After taking Julie’s classes, I feel I am better able to help her; and if she is agitated, I am able to defuse the situation and give her a happier time.”
Bio Julie Bigham, NHCT, began her career as an activity professional in 1993. In 2016 she dedicated herself full-time to Joy Filled Visits, LLC, providing support and motivation for caregivers through training, consultation, and public speaking. She hosts the Joy Filled Visits Memory Café in Matthews, NC, and provides additional support through a free monthly newsletter. She is also a Nursing Home Certified Trainer for Second Wind Dreams®/Virtual Dementia Tour’s NC Grant project.
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?”
During the final editing process, I had my mom read the manuscript and told her, “I’m not sure you’ll like this one because it’s very personal, so be warned.” I’ll never forget her calling me and saying it was her favorite book I had written and she felt I handled those scenes with the grandpa with such sensitivity and love. She loved the sense of love and family in it and how I handled it with dignity and that meant so much.
I basically have a peace about what I wrote, but it was very hard putting this book out there. You’re taking a very personal experience and opening it up to criticism from strangers who haven’t walked in your shoes. What made it worthwhile was that the feedback on it has been wonderful as people love the humor and the family bonds. I think having the humor in it helps as that gets you through difficult times and it shows that you can continue to laugh even while going through a storm.
My main goal was wanting to show that dealing with dementia can deepen a relationship and you can love someone deeper when taking care of them. It was hard being one of my grandpa’s caregivers starting as a sophomore in high school until I was well into college, but I loved spending time with him.
Along the way, I realized that if I went through that as a teen, then there were other teens who had taken on a caregiver role (along with their parents) to a family member. I wanted to give those teens a book that understood what they were going through. Sometimes knowing you’re not alone in a tough situation can help so much and I hope I did that for my readers.
Who knew all those embarrassing, cringe-y moments in middle school and high school could turn into a career? And who would have thought that daydreaming in math class would pay off down the road?
Krysten Lindsay Hager writes about friendship, self-esteem, fitting in, frenemies, crushes, fame, first loves, and values. She is the author of True Colors, Best Friends…Forever?, Next Door to a Star, Landry in Like, Competing with the Star (The Star Series: Book 2), Dating the It Guy, and Can Dreams Come True?
Her debut novel, True Colors, won the Readers Favorite award for best preteen book and the Dayton Book Expo Bestseller Award for childen/teens. Competing with the Star is a Readers’ Favorite Book Award Finalist. Krysten’s work has been featured in USA Today, The Flint Journal, the Grand Haven Tribune, the Beavercreek Current, the Bellbrook Times, Springfield News-Sun, Grand Blanc View, Dayton Daily News and on Living Dayton.
Life on Planet Alz 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.
I hope that my particular take on his predicament as a spouse of an AD patient can help those who are dealing with this situation or who may have to do so in the future. It illustrates how the initial shock of the situation gives way to the realization that one has to learn to cope with it, and finally the acceptance that must come with time and experience.
How to describe memory? It’s like a landscape where snow has fallen. At first the surface is white and pristine. But as time goes by people trudge across the field and leave footprints. Then a cart goes by leaving parallel tracks, and then a car drives along the lane, leaving tire marks. Then the scene gets busier, children on bikes on the way to school or to play leave their tire tracks and women going shopping and so on, until the surface is crisscrossed with memories of what had happened. The analogy for Alzheimer’s disease is that all the tracks get inter-twined and mixed up and confusing, and then it all starts to melt!
We live on Planet Alz, which is a different planet to earth. You may think when you see us walking down the street that we look normal, but we are not, we are actually on a different planet. On our planet the normal rules do not apply. Everything is unpredictable, anything can happen at any moment.
The reaction to this book from family, friends, and the general public has been overwhelmingly positive. I self-published this book in 2017, but have not widely advertised it; it is available on Amazon.com.
I was born in London, UK, where I received a PhD in Chemistry from Cambridge University. I moved to the US in 1966 and became a Professor of Pharmacology at Georgetown Medical School, Washington DC. Upon retirement, I moved to Israel, where I was the Chief Scientist at the Sheba Medical Center, Tel Hashomer. Now I am a Visiting Professor of Chemistry at the Ben Gurion University, Beer Sheva, where I moved to be near my married daughter.