Meet Martin Schreiber, author of "My Two Elaines"

By Martin J. Schreiber 

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 that 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.

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.

authors@mytwoelaines.com

Twitter.com/MyTwoElaines

Facebook.com/MyTwoElaines

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Welcome, Karen Severson, MD, author of “Look, I Shrunk Grandma”

Reposted with permission from AlzAuthors.com

By Karen Severson, MD

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.

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Meet Iris Waichler, author of "Role Reversal"

Reposted with permission from AlzAuthors.com

By Iris Waichler

I began writing my book, Role Reversal: How to Take Care of Yourself and Your Aging Parents, as a tribute to my father, Melvin Sneider. I knew he was an extraordinary and giving person who had touched many lives. When I began writing, he was 95 and in good health after recovering from a cerebral hemorrhage at age 90.

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 Reversaland 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.

Website: http://iriswaichler.com

Facebook:https://www.facebook.com/RoleReversal1/?ref=bookmarks

Twitter: https://twitter.com/IrisWaichler

Link to buy on Amazon

Meet Jaclyn Guenette, Author of “I Smile for Grandpa”

Reposted with permission from AlzAuthors.com

By Jaclyn Guenette

“How do I explain dementia to children?” has been a question asked to me over and over throughout the years. Let’s be honest, dementia is difficult to understand. There are several disease types so it’s complex and often presents differently for different people. I have been privileged to work on a secured dementia unit with families and individuals living with dementia. My role as a Registered Social Worker allows me the unique opportunity to connect with families and address their specific concerns, questions, and needs. When asked about explaining dementia to children, I would pause. I knew the importance of creating a safe and open dialogue with children. I knew parents could greatly benefit from tools to help them cultivate understanding and knowledge. Throughout my search for children’s books and parent resources, I found a wealth of excellent stories and information. I also realized that throughout this journey, my own story developed in my heart.

I Smile for Grandpa is greatly inspired by my own three children and their understanding of the dementia. I love bringing my children to visit the patients and residents at the care facility I work in. These experiences are rewarding and enriching for everyone involved. Last Halloween, I brought my children in for a visit, all dressed up in their costumes. My five year old son was dressed as a Police Officer and didn’t break character once. He had a stack of “post-it” notes, given to him from our front receptionist. He would approach the patients and proceed to give out handwritten tickets in a playful and comical way. My heart swells thinking about it. The unit buzzed with a sense of excitement over the visit from the pint sized Police Officer, Star Wars character, and little Genie with pink hair. To this day, there are patients with “post-it” note tickets hanging in their room.

I have learnt a lot from these experiences both personally and professionally. We need to keep children involved and included. We need to be open and honest with kids about dementia diseases. We need to have conversations in language that children can understand. We need to allow kids to ask questions, feel included, and discover their own unique way of maintaining or establishing a connection. That is why, in addition to the story, adults will appreciate the “Tips for Parents” and the “Question & Answer” sections included in this book.

I Smile for Grandpa is a look into the relationship between my three children and their grandfather. Soccer, camping, and taking long walks are a few of the favorite activities shared together. As the disease progresses in the story, these activities need to change but spending time with one another does not stop. It was important to me that the book explored new ways to enjoy these favorite activities together. The goal is to maintain a meaningful relationship full of love and acceptance.

My partnership with Kathryn Harrison to bring I Smile for Grandpa to life has been a truly rewarding experience. Together we have worked to launch a book that really helps bridge the gap between those living with dementia and the children that surround them. Kathryn’s illustrations create a bright, inviting, safe space for kids to explore the topic. Kids love the adorable little creatures and animals thoughtfully placed throughout the book. The main character “Little Buddy” is relatable for all children. In fact, all three of my children believe “Little Buddy” is them. It was wonderful to grow this project with Kathryn and FlipTurn Publishing.

My personal journey learning and exploring about dementia over the years has inspired a deep desire to help create awareness and promote understanding. My hope is that families will benefit from I Smile for Grandpa through their journey with dementia.

Bio for Jaclyn Guenette

Canadian Writer, Jaclyn Guenette, is a mother of three young children. She is aRegistered Social Worker and Designated Capacity Assessor. Jaclyn is dedicated to working with families living with dementia and creating awareness and understanding of this complex group of diseases.

Follow Jaclyn on Instagram @jaclynannguenette or Twitter @JaclynGuenette

And for more information about the book, visit https://ismileforgrandpa.com/

Meet Mary Edwards-Olson author of "When the Sun Shines Through"

Republished with permission from AlzAuthors.com

By Mary Edwards-Olson

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 Through was 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! 

Bio:

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!

Links:

Facebook: https://m.facebook.com/Author-Mary-Edwards-Olson-112894719423653/

Take the #facealzchallange: http://alztnevents.org/campaignpage.asp?campaignid=207

Instagram: @Author.Mary.Edwards.Olson

Twitter: @authorMEOlson

Video of Journey: https://vimeo.com/243444581

Author web site: https://yram626.wixsite.com/authormeo

Meet Anne F. Balcolm, Whose Blog Became the Book — The Blue Velvet Drape: Dealing With Dementia

Republished with permission from AlzAuthors.com

Mom was diagnosed with dementia in 2006. From the moment my parents told my sister and me the news I began losing sleep, a lot of sleep. The worry of “How were we going to get through this?” was eating me up. I would lie in bed at night for hours thinking and crying while my husband and kids were sleeping.

After many sleepless nights, I began getting out of bed in the middle of the night, going to the living room and jotting down my thoughts in a journal. I had so many thoughts and concerns that I could not write as fast as my thoughts were coming, so I began to type them. I would print out what I typed and tape it into my journal.

After a while I began wondering if other people who were co-caregivers of family members with dementia were feeling the same as me. I had so many emotions…fear, worry, anger, frustration, and I wrote about it all. ALL of the ugly stuff.

I decided to create a blog. I didn’t really care if anyone read it or not, but I thought it would be a good way to keep family and friends of family current with Mom’s condition, so Dad, my sister and I wouldn’t have to keep retelling what was going on. This is how Dealing with Dementia was born. After Mom passed away, I changed the name to The Blue Velvet Drape: Dealing with Dementia. It truly is my journal.

For years, my father, aunt and I attended monthly support group meetings for family members caring for loved ones with dementia. At one of those meetings, Dad mentioned that I had started keeping a blog of our dementia experiences. The moderator of our support group asked for the link, so she and others could read it.

Months went by, and after she had read my blog she encouraged me to keep writing as she felt it was a good resource for others who were also caregivers. Later she encouraged me to publish my blog. “Oh my gosh”, I thought. “Who would want to buy a book about my family?” I am not a writer by any means; my blog is full of misspelled words and grammatical errors. Regardless, people kept reading, relating and encouraging me about the book. Eventually, my blog reached more than 20,000 views across 12 different countries.

It was 9-10 years before I actually bit the bullet and self-published a book in February 2017. My book IS my blog. It isn’t perfect by any means, but it’s mine and my family’s experience.

My hope for my book is that it is helpful to others. Don’t be afraid to ask for help. You cannot do it alone.

Blog Feedback

When thinking of closing my blog after Mom passed away:

Anne,

Take it for someone who has been in your shoes, writing might be the exact thing you need right now. I found it very therapeutic after my father died. Once a caregiver, always a caregiver; your journey is not over yet. You will find that this campaign will stick with you for quite a while. Write about the after affects you go through, it’s important that others learn from your experiences. There’s a course of recovery that every caregiver should know about.

Stay strong my friend and share your wisdom with others,

-Gary Joseph LeBlanc

***

I have referred a friend of mine to your blog two weeks ago. She needed a source to learn how to deal with things. I’m glad you are keeping this blog. Even though I haven’t dealt with this, it’s still therapeutic in other ways. –Amy

***

Don’t close it, Anne…you may need to come back to it someday and it may be that you will want to share this with your children. And like you said, you aren’t finished…take it slow and don’t rush anything right now…I have enjoyed it, although I never commented. I learned a lot, and I appreciate you and how wonderful a daughter you were to your mother. What an inspiration you are. Loving you Anne!

-Kim

Feedback on Amazon

A wonderful book of the daily trials that families face when dealing with dementia. Book offers insight/guidance on how to deal with situations. A must read!

-arrky66

About the Author: 

Anne F. Balcom was born and raised in Louisville, KY. She attended Western Kentucky University from 1984-1988. While she did not graduate from WKU, she later attended the Interior Design Institute at Sullivan College in Louisville getting her Associates of Applied Science degree in Interior Design in 1997. In 2000, she married David, the love of her life. They began growing their family in 2001 with the birth of their daughter, Emma. Their son, Wade came along in 2003. A stay-at-home mom for 12 years, she returned to the fulltime work force in 2013 working for Jefferson County Public Schools as an attendance clerk in an elementary school. In her spare time, she enjoys spending time with her family and friends as well as watching her daughter play soccer and her son run cross country. She has recently started taking painting classes at a locally owned art studio.

Social Media

Facebook: @TheBlueVelvetDrapeDealingWithDementia

Instagram: dealingwithdementiablog

Twitter: @Dementiasucks07

Blog: http://dabalcom.blogspot.com

Meet Lisa Wingate, author of “Tending Roses”

Reposted with permission from AlzAuthors.com

By Lisa Wingate

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.

I’ve talked about caretaking and the Alzheimer’s journey quite a bit in my books. It’s an issue I know intimately. My first novel, Tending Roses, was in part walking that path with my grandmother.

She was a storyteller, a keeper of stories. She could wear you out with her stories, but they always came with a lesson at the end. And then, the stories, one-by-one, piece-by-piece, faded away. The newest ones vanished first. It’s a bittersweet journey, the road of memory loss. My straight-laced, sometimes overbearing grandmother lost some of her inhibitions as she lost those stories. There were funny times, tender times, funny things she said that made us laugh until we cried.

There were times we just cried. When laughter seemed an impossible luxury.

It’s difficult, being with a loved one who is physically able but fading mentally. It’s often a lonely occupation, a painful one. Even friends and family members who would like to help frequently don’t know how to contribute. My hope is that my stories build bridges and create dialogue between primary caretakers and surrounding friends and family members. Just a few hours out of the house, while a friend or family member takes over the duties, can be an incredible gift.

There’s something to learn from the journey of memory loss, I think. Just like my grandmother’s stories, all journeys come with lessons. Preserve the family stories while you can—that’s the first lesson. Listen. Hear. Record. Write down. Be patient. These are treasures. They’re worth your effort. Later, you’ll be glad you took the time. I could fill a dozen shoeboxes if I had a nickel for every time a reader has said to me, I wish we’d gotten the stories down when we had the chance. Now it’s too late.

Those are the saddest words. I hate those words.

Another lesson from the Alzheimer’s journey — it’s hard. Most of us go through life watching heroic acts on the news and wondering if we’d have what it takes to do the right thing, to do the hard thing. To be heroic ourselves. It’s important to remember that true heroism doesn’t manifest itself only in those who run into burning buildings or cross battlefields to save the wounded. Heroism exists in quieter forms, in entirely unremarkable places, in everyday efforts and little battles. It’s found in those who sacrifice day after day, who love someone who can’t always demonstrate love in return. Someone who can be frustrating, frustrated, sad, confused, unfamiliar, repetitive. Who can’t say, I love you. Thank you for doing this for me.

Don’t leave me.

I need you.

Caretakers are heroes. Straight up. They stand in the gap between this disease and its victims.

I look forward to the day when they’ll no longer be needed.

Copyright 2018 Wingate Media, LLC

About the Author

 Lisa Wingate is a former journalist, inspirational speaker, and New York Times Bestselling Author of thirty novels. Her work has won or been nominated for many awards, including the Pat Conroy Southern Book Prize, the Oklahoma Book Award, The Carol Award, and the Christy Award. Her blockbuster hit, Before We Were Yours remained on the New York Times Bestseller List for over ten months, was Publishers Weekly’s #3 longest running bestseller of 2017, and was voted by readers as the 2017 Goodreads Choice Award winner for historical fiction. Before We Were Yours has been a book club favorite worldwide and to date has sold over one million copies.

Lisa’s website: www.Lisawingate.com

Twitter: http://twitter.com/#!/lisawingate

Facebook: https://www.facebook.com/LisaWingateAuthorPage?ref=br_tf

Pinterest: https://pinterest.com/lisawingatebook/

Lisa’s blog: http://theuntoldstory.guru