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.
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.
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.
My Mom was diagnosed with Alzheimer’s when she was 56 years old and still working two jobs. I was 33 and became her full-time caregiver. A few years into our journey, when Mom still occasionally had coherent moments, we talked about how difficult this path is and what limited resources there were to help us. There wasn’t anyone for us to talk to. During Continue reading →
Writing a book about Alzheimer’s was not something I planned to do when I sat down to write my first novel. It was a lifelong dream to one day write a book, but I had something else in mind when I started typing. That story was going nowhere when I met the captivating couple that inspired me to write Blue Hydrangeas,an Alzheimer’s love story.
She was a beautiful 86-year old who was very confused when I, her case manager, met with her regarding her discharge plan from the hospital. “I’m so mixed up,” she said multiple Continue reading →
My goal in life was not to become a writer. I enjoyed writing when I was younger, and I toyed with the idea making a career of it until I received my first negative review from an English teacher. I don’t take criticism very well, and I took her comments very personally. Years later, though, after the sting of her rejection had faded, and especially when I became a caregiver, the need to express myself resurfaced. Continue reading →
According to Alzheimer’s International, globally, there are nearly 44 million people that have Alzheimer’s or a related dementia.
In America alone, there are 5.3 million living with Alzheimer’s disease. 74% of caregivers of people with Alzheimer’s disease and other dementias reported that they were “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver. Certainly these caregivers and their loved ones are in a health care crisis. Continue reading →
Unlike some caregivers who can draw upon their experience as a parent or time spent taking care of siblings when they were younger, I had no such reservoir of caregiving knowledge when my parents fell ill. An only child who lived 1,300 miles away from my parents, my father began showing signs of dementia while I was in my mid-thirties. Assuming the role of long-distance caregiver, I helped my mother by paying bills, sending supplies, and researching care options. Continue reading →
After five years in the making, writing this memoir has been one of the most intense endeavors I’ve ever taken on, but well worth it.
While I was writing this memoir I discovered how much pain I still had deep inside of me. Pain from some of the experiences. Pain from not knowing what or how to deal with dementia. Pain of not understanding what caregiving entails. Pain from dealing with the healthcare field. Finally, pain when it’s all over. Continue reading →