by Irene Frances Olson, AlzAuthors Global Outreach Coordinator
The quickest method to connect with someone is the virtual, social media connection with which we are all familiar. But unless a person crosses the precipice from virtual to real, there is no way to truly understand the benefit of in-person relationships.
That was the case for the AlzAuthors Management Team when all six of us convened at the 2018 National Caregiving Conference in Chicago. The team was generously gifted with the opportunity to gather from the corners of the world from which we hail: the states of Washington, Montana, Ohio, North Carolina, and New York, and the Canadian province of Ontario. Meeting for the first time was a highly anticipated emotional event that proved beyond beneficial to me. You think you know someone after spending months or years emailing, texting, and video-calling, but what I discovered is you can’t truly know a person until extended “facetime” occurs.
I met with as many conference attendees as I could and having done so, I came away concluding that community is everything. Like-minded individuals – at least 250 of them – gathered together for several days to feed the spirit, nourish the soul, and further the mission of being a support to the weary caregiver.
Regardless of which disease renders a person in need of care – Alzheimer’s, cancer, ALS, and the like – caregiver heroes need as much support as can be given. A powerful community goes a long way toward lessening a person’s burden, and as AlzAuthors has been known to say:
One can sing a lonely song, but we chose to form a choir and create harmony.
The AlzAuthors management team is pleased to announce the publication of Alzheimer’s and Dementia Caregiving Stories: 58 Authors Share their Inspiring Personal Experiences, Vol. 1. This poignant collection of stories grew out of the first year’s blog posts on AlzAuthors.com, from June 1, 2016 through May 31, 2017. Within its pages, you will be immersed in a world of writing about Alzheimer’s and dementia.
The contributing authors have all been touched by Alzheimer’s and dementia, whether they live with the disease, are caregivers, or simply care. They reveal the story behind their books, what made them sit down and painstakingly share their story, and what they have gained from doing so.
This year-long project was made possible through the international collaboration of seven women, all daughters of dementia, your AlzAuthors management team. We have worked tirelessly to find and vet resources – memoir, novels, nonfiction, poetry, children’s books, and blogs – to provide those living with dementia a friendly place to find the support and knowledge they need. We believe that by sharing our stories we open a dialogue that not only reduces the stigma surrounding a dementia diagnosis, but enlightens others to the reality that “I made it through. You can too.”
Heartfelt thanks go to our Special Projects Editor Jay Artale, author of A Turbulent Mind: A Poetry Collection of a Mother’s Journey with Alzheimer’s, who donated countless hours to the design and formatting of this beautiful book.
In early 2019, we will begin the process of creating Volume 2, which will consist of posts from June 1, 2017 through May 31, 2018.
This book would make a wonderful gift for a caregiver you may know who is in need of knowledge, support, and comfort. Please keep it in mind as you do your holiday shopping. It is currently available on Amazon in Kindle format. Purchase here. A paperback is in the works and should be published within the next week or two.
All proceeds from anthology sales will be used by AlzAuthors.comto maintain our site and promote our authors’ books.
When our mama was diagnosed with infiltrating pancreatic cancer and given three-to-six months to live, she was the sole caregiver for our 87-year-old father “Papa,” who was in the early stages of dementia. Over the next 13 years, my sister Diane, a pathologist, and I shared care of them from opposite coasts and opposing viewpoints, often engaging in hand-to-heart combat over what constitutes quality of life. Sisterly love turned to https://sisterlyshove.comin the new book we co-authored.
After hearing the news that Mama had pancreatic cancer, Diane proclaimed her “a goner.” But after she became dissatisfied with both the home care I arranged and the health care system in our hometown in North Carolina, Diane took Mama against doctor’s orders to live in her home in a California beach town. She quickly discovered that the wild card of having someone like Papa with dementia in the mix made cancer care and practicing medicine impossible for her.
Papa ping-ponged back to me in North Carolina and lived in a memory care facility I loved for five years.But after he broke both hips, Diane eldernapped him from the facility,quit practicing medicine, and doctored him by herself 24/7 for more than seven years at her home in California.
The story my sister and I tell in “Sisterly Shove” reflects a new kind of sibling rivalry among baby boomers: Which sister, or sometimes brother, is best willing and financially able to care for and make life-or-death decisions for elderly parents, especially in light of their own obligations to young children? Is it possible to share care among siblings, especially in a strong-willed and highly opinionated family like ours with a both a sister and brother who are doctors calling the shots long distance?
The Alzheimer’s Association says that 1 in 3 seniors now dies with Alzheimer’s or another dementia. In the case of Papa and his siblings, dementia snatched the memories and daily lives of 4 out of 5 of them. Since we are part of an extended family predisposed to living long lives, most of our cousins have also experienced Sisterly Shove. Since the book came out, we’ve learned that three once-close female cousins who all work in health care and battled over care of their mom have now been estranged for years.
We’ve also found that many of our readers have experienced similarly heart-wrenching family caregiving battles and can totally relate. Family relationships have clearly become an unintended casualty of the Alzheimer’s and dementia epidemic. We are working to share our story, not only in our book, but also in person at conferences and within caregiver support groups in order to help siblings work together in a spirit of compromise.
My co-author Diane went to medical school in the days when health care was a fee-for- service world. She believes that if we don’t support research and change our approaches to eldercare under the new value-based medicine model, we will pit one generation against the next and compromise our ability to be competitive in a global economy. That’s one perspective and hope for our society that the two of us certainly will not fight about.
About the Author
Malia Kline, the younger sister in “Sisterly Shove” is a copywriter who studied journalism at The University of North Carolina at Chapel Hill and was formerly a writer/producer at a CBS-affiliate TV station. She was also the scriptwriter on videos in the Duke Family Series. One of them, It’s Potty Time, was named “KidVid of the Year” by Roger Ebert and became available in nearly 700 libraries worldwide. Malia now owns her own copywriting business and shares her word-obsessed perspectives in MaliaMania, a comedic grammar blog. She lives in Charlotte, N.C. with her husband Steve and has one daughter who has followed in her sister’s footsteps as an M.D., recently starting her pediatric residency.
When the Unthinkable Becomes Inevitable: The Awful Dawn of Dementia
Up to this point in my life, most of my blogging has been for parents of adopted, foster, or special needs children. Back in 2002, when my husband and I first became foster parents (and later adoptive parents), we really had no idea what we were in for. Which was probably a good thing, because I’m not sure we would have had the courage to move forward with it, had we known.
Now, as I’m entering the sixth month of caring for my mother, a dementia patient, I’m realizing that this is a lot like that. Lots of dirty laundry and temper tantrums, interspersed with moments of sweetness and delight. The tumultuous relationship we had during my teen years is gone. These past six months have been the sweetest, yet in many ways also the hardest – for both of us. But even the hard times are not without their rewards. For instance, when my daughter is being her snarky teenage self, she will do for her “Mammy” what she would never do in a million years for “Mean Old Mom.”
Best of all, I don’t have to make those bi-monthly trips to Georgia to visit her in that godforsaken place (Grace House, my Aunt Fanny), where the residents sat slumped in the half-light like so much castaway furniture. She spent most of her time on her bed, exhausted from writing notebooks full of gibberish, trying to work out why she had been deprived of her freedom, her marriage, and most of her life. My sisters and I would take her out as often as we could from our respective homes in Indiana, Washington State, and New Hampshire (plus the youngest who lived nearby but was trying to balance the demands of caring for her family, a full-time job, and both my parents), but it grew harder and harder to bring her back to the facility. More than once I begged God to take her in her sleep. I was sure I knew where she was going, and it was an infinitely better place than this.
Finally, one day when I realized that there really wasn’t any reason for her to stay where she was, I broached the subject with my father, who readily agreed that Mom would be happier with me. Just before Thanksgiving, we decided – so she could go back by the end of Christmas if it didn’t work out.
But in my heart, I knew there was no going back. “How’d you like to come home with me, Mom?” Her dull expression brightened for just a moment. “They won’t let you take me,” she said. “The judge won’t let me go.”
Somewhere in her clouded mind sat a cantankerous old geezer who called the shots. “It’s okay, Mom. Dad said I could take you – and the Judge has no jurisdiction in Indiana.” And so, her friends all gathered to celebrate her 77th birthday on that last day before we left. “I’m so happy for your mom,” each of them said to me. “She’s going to be so much better off with you.” They gave her warm track suits to insulate her from the Indiana winters, and posted pictures and letters regularly both in the mail and on the private Facebook page where I keep everyone informed of her comings and goings.
Then we got on a plane and … she was free. It wasn’t like her old life, with the man she’d loved for more than fifty years. Instead of a spacious, well-kept home she had a room in the basement with a little half-bath near my office, and she struggled to climb a flight of stairs a couple of times each day.
But how she smiled. In photograph after photograph, her eyes alight as she once more made cookies, beat us at Scrabble, sang at birthday parties, and sported a pretty Easter dress. She had been given a second chance at life. And I was going to make the most of it, for as long as I could.
There’s still so much to learn, so much I’m still figuring out. But I decided I want to keep track of the steps along the journey, in case there was someone else out there who, like me, just needed someone who could say, convincingly, “Me, Too.” So, if that’s you, welcome. Pour yourself a cup of… well, whatever strikes your fancy. I won’t judge. And let’s take the time to encourage each other, in good days and bad. Because when the unthinkable becomes the inevitable, the steadying hand of friendship can make all the difference in the world.
About the Author
Heidi Hess Saxton and her mom, Sandy, live with Heidi’s husband Craig, their teenage children, and two energetic dogs in northern Indiana. In her spare time, Heidi is a writer and editor, and blogs as often as she can at “Life on the Road Less Traveled” (for adult caregivers), “Extraordinary Moms Network” (for parents of adopted and special needs children), and “Ask the Catholic Editor” (for non-fiction writers). Her latest book is Advent with Saint Teresa of Calcutta(Franciscan Media).
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