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).
I was a corporate and banking attorney when my father began experiencing mini-strokes and having difficulty with his memory. We didn’t know at the time he was embarking on a ten-year battle with Alzheimer’s disease. And what a battle it was.
Even though I was well versed in law and finance, it wasn’t until I faced my father’s illness that I understood the importance of having proper estate planning documents. The more I learned, the more I realized there is a great deal of information most people (even attorneys) don’t know.
Before my father’s decline, he would mention from time to time about how to handle his affairs when he died. He also made it clear on many occasions that he did not want any artificial means to keep him alive. Knowing full well my mother would not be happy with his decision, I asked him to meet with a lawyer and put his wishes in writing.
As a result, he consulted with a seasoned estate planning attorney who drafted a last will and testament, revocable trust, health care power of attorney, financial power of attorney, and living will.
It is hard enough to care for someone with Alzheimer’s. It would have been impossible if we didn’t already have these documents in place. Because of my father’s planning, the financial, healthcare, and probate matters were handled seamlessly. It allowed us to focus on our father’s care.
Seeing first-hand how proper estate planning helped our family, I wanted to help others in a similar situation. After my father’s death, I changed my focus from finance to estate planning. I wanted to use what I learned from the front lines to benefit others.
I went into private law practice in Florida with a partner, whose father, incidentally, had terminal cancer. We lived the issues that many caregivers face. It was our mission to help caregivers understand how estate planning could help them. We especially reached out to those families in the “Sandwich Generation” who had young children they wanted to protect and who had real concerns about their aging parents.
Due to my husband’s career, we moved to California. I thought about starting another practice, but soon realized what I really wanted to do was educate others about estate planning.
I wrote Estate Planning for the Sandwich Generation: How to Help Your Parents and Protect Your Kids to be a resource for caregivers. There are ten steps for creating your own estate plan and five talks you should have with your parents. It is my mission to guide others through challenges of aging parents and caregiving.
Robert H. Schuller said, “Tough times never last, but tough people do.” It is my hope that this book with help people during those tough times.
About the Author
Catherine Hodder, Esq. is an estate planning attorney turned author. She enjoys working with families who would rather be doing anything other than estate planning. Her Florida law practice, featured in the Palm Beach Post, made “house calls” to help families with their estate planning needs. She now resides in California, writing helpful articles for members of the “Sandwich Generation.” She is also co-author of Law Office on a Laptop: How to Set Up Your Own Successful Mobile Law Practice, an #1 Amazon Kindle bestseller in law office education.
I was a teacher, professor, artist, filmmaker, mother of two adult children, a wife, a former American Fulbright, and an active member of my community. I am now 63. I was diagnosed twice, first in September 2016 with a Spect scan, then again in January 2017, when another neurologist ordered an FDG Pet scan. Twice I was told the pattern of the images was that of Alzheimer’s. The changes and symptoms of what appears to me to be a rapid form of the disease have been radical.
The neurologist recommended I retire. I pushed myself to continue through the term, and then resigned from my twenty year teaching career last summer. There was no recognition for my many years of service. People I had known for decades, friends and colleagues disappeared.
The lawyers told me to get my affairs in order and prepare for the eventuality of ending up in a memory care facility. I was not given any guidelines beyond being told by the neurologist to exercise and play Sudoku and Lumosity.
I thought joining an early stage support group would give me purpose and I would make friends. I attended a Reminiscence support group at the neurologist’s hospital, and met people two and three decades older than me who were in later stages, who bounced a balloon to each other as an activity. I figured there needs to be more to life in early stage than this. After I sent the social worker an email questioning if there were support groups for younger onset, I was told to not return to the group. I met with a woman who heads a fledgling Alzheimer’s organization that offers caregivers support groups in my county, in the hopes that I might start a early stage support group. She told me the only early stage people she knew were not interested in “being out” about having the disease, because of its stigma.
Where was I to turn for social support? I researched and found online communities for people with dementia. Alzconnected.org sponsored by the Alzheimer’s Association is an online forum, and the early onset forum became my go to place, to communicate with others in the early stages. I contacted the founder of Dementia Mentors https://www.dementiamentors.org/, who paired me with an online dementia mentor who is 59, and has been diagnosed with early Alzheimer’s and Frontotemporal Dementia, who I meet with once a week over virtual Zoom chats. Dementia Alliance International support groups, an online community of people with dementia from all over the world, who counter the stigma and advocate for inclusion and having our voices heard, have become my online friends https://www.dementiaallianceinternational.org/.
I joined Dementia Action Alliance and was recommended for the art workgroup. It’s comprised of both people with dementia and professionals without dementia, who work in the arts https://daanow.org/. Opportunities for discussing stigma and the language we use to describe ourselves have opened up between us. The chair of DAA has become a dear friend who has visited me in my home and regularly Zoom chats with me every week.
The blog has given me the opportunity to tell it like it is for me, the good, bad and ugly. It is the channel for my uncensored self-expression. I upload my artwork and write about my experiences, relationships, and the trials and tribulations of living with a changed and changing brain. Caregivers, people in the dementia community, and old friends and family have written to me with appreciation for my raw honesty and ability to put into words and images my experience of falling down the rabbit hole, that to me, is Alzheimer’s. I write for you and I write for myself to remember. My art captures what cannot always be put into words. Sharing my blog is my way of not withdrawing from the world and demonstrating that I am still a creative person with thoughts, feelings and opinions that have resonance.
About the Author
Minna Packer has been an educator, filmmaker, producer/director, fine artist and writer. Born in 1954 in New York City, she is a first generation American, born to Jewish Holocaust survivors from Eastern Europe, who emigrated to the U.S in 1951.
She received her professional education at Pratt Institute (MFA); New York University and The Nova Scotia College of Art and Design University in Halifax, Nova Scotia, Canada (BFA).
A recipient of The Nancy Malone award for excellence in directing, through New York Woman in Film and Television, she has also been awarded grants for her work from The Trust for Mutual Understanding, The New Jersey State Council on the Arts, The Gombin Jewish Historical and Genealogical Society, and the US State Department .
She has been a distinguished lecturer and professor at New York University, Jersey City State University, The University of Lodz, Poland, the Leon Schiller Film School, Jagiellonian University and Jerusalem University. For twenty years she chaired the art, art history and media department at The Hudson School- an independent school for gifted students in New Jersey.
In 2017 she was diagnosed with Early Onset Alzheimer’s and retired from teaching. She participates in on-line social and educational webinars with Dementia Alliance International, Dementia Mentors and Dementia Action Alliance, and writes a blog, Suddenly Mad: My Voyage Through Early Alzheimer’s www.suddenlymad.com. Since her retirement, she treasures the time spent with her family and baby granddaughter.
If there’s one thing worse than Alzheimer’s, it’s ignorance of the disease.
Count me among those who were ignorant. Over the past decade, I’ve learned more about Alzheimer’s than I ever thought was possible. To be sure, I’m no expert on the science of the brain. But I know what Alzheimer’s did to my heart – it broke it when it struck my wife Elaine some 14 years ago.
I’m striking back against Alzheimer’s by speaking out, to wipe out some of that ignorance of the disease. My book, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, came out in November 2016. Loved ones of those with dementia say it resonates with them. I’ve done more than 150 presentations in four states, with lots more coming up. I’m energized by these audiences.
Following a recent event in Wisconsin, a man who is a caregiver for his wife with dementia approached. He wanted to thank me for writing the book.
“It turned my life around,” he told me, tears welling in his eyes – and soon in mine, too. “You saved me.”
Comments like those are beyond what I expected when I wrote My Two Elaines. My goal was to help caregivers learn, cope and survive. I felt compelled to share my own experiences so that other caregivers would have an easier time.
My book grew out of a short magazine article about me and Elaine that was published in a Milwaukee-area magazine in July 2014. Up to that time, only my family and closest friends even knew I was an Alzheimer’s caregiver. After reading the article, they urged me to use my name recognition as a former governor to draw attention to the plight of these heroes.
Fast forward to the fall of 2015, after Elaine moved to memory care assisted living. My quieter time at home was allowing me to reflect on the now-completed experience of caregiving at home, and to ask myself “what’s next?” I set to work, pouring out my thoughts on paper and on my laptop – whichever I had at my fingertips when inspiration struck.
In just two months, I had a first draft of a book, and I began to share it with not only my inner circle, but also with friends I’d lost contact with due to my caregiving responsibilities. They told me, “we had no idea what you were going through.” That made me think, if it was happening to me, surely there must be many other caregivers whose work was going unnoticed, unacknowledged and unsupported. That spurred me to get my book published.
The first shipment of books (5,000!) had barely landed in my garage in November 2016, and right away I hit the road. The response was so great I had to order more books (10,000!) in early 2017. When it was time to order once again, I took a step back and knew I needed to include some of the “conversations from the road.” I also realized that while I had told my story and Elaine’s (by way of her journal entries), I hadn’t given our kids the chance to voice their thoughts. So now, all four of them have added their perspectives in the Epilogue.
I sincerely hope that my book is helping others who are experiencing isolation, grief and depression due to caregiving. We cannot give up. We have to educate others.
If there’s anything worse than Alzheimer’s, it’s ignorance of the disease.
www.mytwoelaines.com includes complete information, including a list of Marty’s upcoming Events and a speaker request form.
My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver is available on Amazon. To request autographed copies, use the order form at www.mytwoelaines.com.
This book has been in my head for years. It started with the constant frustration of being caught in the middle of disagreements between nursing homes and families. Sent as a representative of the nursing home to address aggressive behaviors, nurses would relate to me how horrible and dangerous the person with dementia was acting. People were getting injured and care was not able to be performed. I would speak to the families and they were angry with the homes. “They are trained to handle these problems. Why do you need medications?” The families felt the homes were medicating for staff convenience.
In the heat of these situations, it was difficult to explain all the medications I have available and all the factors going into my decisions. The nursing home staff would come to me saying the families just didn’t understand or acted unreasonable. Families were upset no one was taking the time to understand their parent. There were several families who still had not even accepted their loved one had dementia. How was I going to explain the many facets of dementia in a way to make it clear? I always wished I had a book that I could hand to people, so everyone involved could understand both sides of the issue. Instead of homes and families in perpetual battles, I wanted us to all be on the same team. In this way, the person struggling with dementia is provided the best care possible.
My other motivation for writing Look, I Shrunk Grandma, a Psychiatrist’s Guide to Nursing Homes, Dementia and End of Life came from seeing persons with dementia suffering. Many families cling to a natural denial that dementia is terminal. As a result, they ask for medical procedures that could prolong life, but may also inadvertently cause more suffering. When stopping numerous interventions were suggested, we have been accused of being heartless or cruel, allowing someone to die. With the experience from my mother’s death, I wanted to do what I could to decrease end-of-life suffering. Modern medicine has become a curse and a blessing. We need to help people understand its limitations. Unless they understand these limitations, it is unfair to expect them to make the best decisions for their families. Most people don’t have a medical background and feel overwhelmed.
Look, I Shrunk Grandma is newly released, but the feedback has been positive. Nurses reading the book say that they finally feel understood. Part of the book discusses why I feel people have trouble letting loved ones go into hospice care. The families that have read this have felt less guilty in doing so, as well as better able to make informed decisions.
Lastly, I had to write with humor. I find it incredibly hard to read about such difficult subjects and felt humor would make it easier.
About the Author
I am a country girl born in Indiana, but moved to Hartford, Connecticut for my father’s work in the insurance industry. My parents threw me and my siblings outside with a ball all day to keep us out of their hair. As a result, I grew up loving sports and entered Ithaca College to pursue a Physical Education degree. My chemistry teacher told me I had a great memory and suggested I go to medical school. I took my great memory to University of Connecticut and later Brown University to study psychiatry. I always knew I loved the mixture of the mind and the body and had to go into Geriatric Psychiatry. I later completed a fellowship in Geriatric Psychiatry at Albert Einstein.
Despite being a psychiatrist, I act more like a pediatrician, as I love to laugh and do it often. I find it hard to be serious. Today I live in Florida and enjoy time with my family. I still play a ton of sports, but get injured way too often. I now work in the addiction field trying to save young lives. Maybe I will write about that someday as well.
Suddenly things changed. He was hospitalized for pneumonia. As it happens with many seniors, he suffered a cascade of medical problems. They included irregular heartbeat, inability to eat food except if it was pureed, memory issues and dementia, incontinence, and decreased mobility. He was unable to get dressed or bathe without help. His decline continued until his death at age 97.
While I was writing my book, I encountered many people who were caregivers. The numbers surprised me. I had been a caregiver for my mother and two friends prior to becoming my dad’s primary caregiver. I come to caregiving from two perspectives. I have been a medical social worker and patient advocate for forty years. My work involved helping patients and family members cope with catastrophic illness and helping them to set up additional care post hospitalization.
I chose to blend my personal experience as a caregiver with my professional expertise in writing my book. Many caregivers face universal challenges that leave us feeling overwhelmed and alone. Before he became ill, my dad had written his own autobiography. I learned he had become a caregiver from an early age trying to protect his brothers and sister from a father who was emotionally and physically abusive. I decided to use his voice with mine in writing my book. He became a caregiver for many people in his life, something I had never realized until I read his writing.
My book is an unusual combination of memoir and self-help. It is also unusual in having the voices of the caregiver and the person who receives care. I use my dad’s life story as a springboard to approach common caregiving concerns. For example, when my dad decides to go into assisted living, I have a chapter where I interview a nursing director about what family members and potential residents should know and ask about when considering this transition.
My goal in writing my book was to reach as many people as possible who are struggling with this ultimate role reversal, where the adult child becomes a caregiver for their parent. It is a useful tool for all caregivers. I address topics like coping with grief, memory loss, and confusion to concrete issues like estate planning and assessing the right level of care.
When I contacted publishers, some told me since my father was not well-known nobody would care about his story. I have been so pleased to hear from so many people telling me how much they connected with him and how they loved his story as well as my professional input.
The response to my book has been surprising, gratifying, and overwhelming. It has won six major book awards. People seem to really respond to the the way I have structured Role Reversal and find the information, resources, and support strategies very useful in their daily lives. This brings me great joy. I am very proud of my book and love the idea that my dad will live on through my readers.
About The Author
Iris Waichler, MSW, LCSW is the author of 3 books including Role Reversal How to Take Care of Yourself and Your Aging Parents. Role Reversal is the winner of 6 major book awards. Ms. Waichler has been a medical social worker and patient advocate for 40 years. She has done freelance writing, counseling, and workshops, on patient advocacy and healthcare related issues for 17 years.
I wrote, When the Sun Shines Through, because of my personal journey. I was a caregiver for my mother and watched first hand as Alzheimer’s slowly stole her from us.
My mother, Elizabeth Edwards, lost her fight with Alzheimer’s on October 23, 2017.
Caring for my mother was a roller coaster of emotions. You go from crying so hard that every inch of your body aches, to being so overwhelmed with joy when a piece of them peeks through the mask of Alzheimer’s. I was ignorant to this disease and its cruelty until I watched it slowly take my mother, piece by piece. It was hard as a caretaker to understand that Mom wasn’t Mom anymore in terms of behavior. There were days I thought she was being lazy or difficult on purpose and I would get so upset. It breaks my heart I ever thought that. It was the disease, in those moments. Please remember it’s the disease. Your loved one is in there, scared and confused. Show compassion and remember to take time for yourself. As a caregiver, we often take a back seat, but remember your loved one needs you to be happy, and emotionally and physically healthy. They may not express it but they understand.
This never-ending pain pushed me to write a book that leads you towards the light, towards the happiness that can often be overlooked because the sadness and darkness will consume you. This was what happened to me; I was so sad ~ the type of sadness that changes a person. Because of this sadness, I often missed those happy moments that seem to shine through. The moments when your loved one remembers you or a childhood event, or when they smile, or remember to tell you they love you. Hold on to that. Let that consume you. Do not focus on the horror of slowly losing your hero or best friend; that was Mom to me, she was my hero and my best friend. The strongest women I knew was fading.
I also witnessed the toll watching a loved one suffer from this disease had on my children. They weren’t just watching their Nana suffer, they were watching their mother break down begging God for a miracle. They were also watching their grandpa become more and more withdrawn, forcing smiles and happiness. I knew there needed to be a book that could help the often forgotten sufferers, the children, but also offer comfort to the adults. Thus, When the Sun Shines Throughwas born.
Everyone who has purchased the book from me has left with tears in their eyes or a smile on their face. Both children and adults have found peace and comfort in my book. Others have written me or left positive feedback saying my book tells such a painful story in such a sweet comforting way. The words along with the beautiful illustrations remind them to hold on to the good memories they steal from a disease that tries to do nothing but cause heartbreak. It currently has a 4-star rating on Amazon and was on their hot new release list and a top seller on Kindle.
Because of this book I have been able to partner with our local Barnes and Noble to turn the store purple and raise over $2,000 to help find a cure. The Elizabeth Edwards Grant For Hopewas created to help those in our community that can’t afford care or supplies needed to maintain a healthy happy life. We had our first event where we raised almost $5,000! The wonderful part was bringing those with the disease together with the community, those that are caregivers, and those that have lost someone they love under one roof. We gave Alzheimer’s a face!
About the Author
My name is Mary Edwards-Olson. I’m a writer, a mother, a daughter, a wife. I wake up every day wanting to give up and crawl into a hole, but my drive to find a cure overpowers this emotion. I fight and I refuse to stop! I talk constantly about my journey, the need for a cure, and the pain the hopeless carry. I am a voice and I refuse to be silenced! This is my first book. I have another being illustrated now along with a novel I’m working on as we speak. I have been a guest speaker at many local events and hope to spread my message far beyond my community. Thank you to all of you that fight to end this horrible disease!
Grant go fund me: https://www.gofundme.com/elizabeth-edwards-grand-for-hope
In every story I write, there are bits of real life, nibblets of sheer invention and sprinkles of serendipity. Readers often ask me which parts are which. Sometimes, it’s hard to dissect. Our way of looking at the world comes from our experiences in it. Our passions, the things we care about enough to examine, do as well. Continue reading →
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.
My name is Wendy Mitchell and I was diagnosed with Young Onset Dementia on the 31st July 2014. Who would have thought, on that day of diagnosis, over 3 years ago, that I would now be publishing a book, Somebody I Used to Know? But, on the other hand, why not?
When people hear the word dementia, they often think of the end stages. Well, it has to have a beginning and a middle and Continue reading →