Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.


Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Wednesday, July 18, 2018

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.



Wednesday, July 11, 2018

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.






Wednesday, July 4, 2018

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/

Wednesday, June 27, 2018

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:




Twitter: @authorMEOlson

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

Wednesday, June 20, 2018

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

Wednesday, June 13, 2018

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.

Tuesday, June 12, 2018

Alzheimer's Daughter made it to the Best Alzheimer's Books of All Time

BookAuthority Best Alzheimer's Books of All Time
"Alzheimer's Daughter", was named number five in BookAuthority's Best Alzheimer's Books of All Time:

BookAuthority collects and ranks the best books in the world, and it is a great honor to get this kind of recognition. Thank you for all your support!
The book is available for purchase on Amazon.

Wednesday, June 6, 2018

Happy Anniversary AlzAuthors! Alzheimer’s & Brain Awareness Month Book Sale & Giveaway



Republished with permission from AlzAuthors.com
 


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, BlipIQ and Samada.com.
  • 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!

And now, the books:

Trading Places, Becoming My Mother’s Mother memoir by Sandra Bullock Smith, Kindle FREE through 6/10 then 2.99

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 Daughter readers 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.

Requiem for the Status Quo, fiction by Irene Frances Olson, Kindle 1.99, paperback 8.97 (visit Black Rose Writing; use discount code ALZAUTHORS)

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 2.99

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 Hero tells 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. Sale price begins at 12 noon, EST, on 6/6/18. 

 Motherhood: Lost and Found takes the reader on a journey where Alzheimer’s disease and infertility intersect. At age 33, 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. The voice in Ann’s memoir has been called constant and abiding, her imagery indelible. Her graceful, exacting language rises above the grief of infertility and the struggle to care for aging parents, connecting the reader ultimately to the heartbeat and resilience of the human experience. This memoir was honored by Next Generation Independent Book Awards, Readers’ Favorite and Voices for Horses, an International Equestrian Book Award.

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 Forget presents 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 Home is a wry, bittersweet, and occasionally humorous account of one woman’s determination to love her mother before it’s too late.

Lewy, Mom, and Me, memoir by Peggy Bushy, Kindle .99, paperback 9.99  

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 via publisher’s website

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 Love is 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.

***

Thank you for visiting our book sale and giveaway. Don’t forget to enter the raffle!

Wednesday, May 30, 2018

Welcome back, Wendy Mitchell, author of “Somebody I Used To Know”

Republished with permission from AlzAuthors.com


By Wendy Mitchell

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 I’m someone heading for 4 years into living with the condition. We all had talents before a diagnosis, we don’t suddenly lose all those talents overnight the day we receive that diagnosis. We simply have to adapt them to use in different ways, and with support can often achieve something remarkable.

I wanted to write this book to show people how there is a life to be lived after a devastating diagnosis. Yes, mine was of dementia, but it could apply to any crisis or life changing moment. I wanted to show that with the right positive attitude and support, you can adapt and live a good, if not different, life. So yes, my book should be read by everyone who is affected by dementia or healthcare professionals in the field, but moreover, it should be read by anyone to show them how living in the moment can enhance anyone’s life.

The feedback since the publication of my book in the UK has been overwhelming and humbling. Many people have been touched by my openness. I used to be an extremely private person, but was so shocked at the lack of awareness and lack of understanding that I’ll now shout from the rooftops at every opportunity. My book has enabled me to reach so many more people. Family members have often told me how they’re ashamed to admit their loved one has dementia. My response is to say, “we have a complex brain disease, why on earth should anyone be ashamed?” No one should have to face dementia on their own, least of all through shame or stigma.

I often write of outwitting and outmaneuvering dementia, almost relishing the challenge of the fight. People so often dwell on the losses, on what the future may hold, or on the negatives. Why not instead concentrate on what you CAN still do or what you CAN do, if only differently than before.

Moreover, why dwell on the future? We have no control over what dementia will strip away from us in the future, so why dwell on the matter? Instead, focus on enjoying what you have today. The future will come soon enough and a day spent regretting and in sadness is a day of happiness wasted. I hope you gain knowledge about dementia, but also knowledge about life from reading my book, Somebody I Used to Know.

Bio:
I was diagnosed with Young Onset Dementia on the 31st July 2014 at the age of 58 years young. I might not have much of a short-term memory but that’s one date I’ll never forget.

I have 2 daughters and live happily in Yorkshire.

I retired early from the NHS, having worked as a non-clinical team leader for 20 years.

Post diagnosis, I was shocked by the lack of awareness, both in the community and clinical world, so I now spend all my time travelling around the country raising awareness and encouraging others to embrace my passion for research.



Twitter: @WendyPMitchell

Wednesday, May 23, 2018

Meet Miki Klocke, Photographer and Author of “Alzheimer’s: Beyond Caregiving”

Republished with permission from AlzAuthors.com


By Miki Klocke

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 that conversation I promised Mom that I would share our story so that it could help others. I had no clue how I would accomplish that as I had a degree in photography and limited writing experience.

Many very overwhelming years passed where that promise remained a passing thought. During what would be Mom’s fourth year on hospice, I finally had the time to get serious about keeping my promise. I wrote, I shared, I rewrote many, many times. Photography has always been a part of my life, a lifeline, in fact, during the difficult years of caregiving. Through encouragement, I was led to combine my photography and writing into a visual and poetic expression of the trials and tribulations of caregiving that became Alzheimer’s: Beyond Caregiving.

One of the photos in Miki Klocke’s book.

Through 17 years of caregiving, my greatest source of support came from Caregiver Support groups offered by the Alzheimer’s Association. Hearing the stories of others who had gone before me and those navigating a similar path gave me hope and strength to continue on. They also gave me the permission I needed to express my fears, shed tears and verbalize the anger and shame at not being able to do enough. I want to make not only Alzheimer’s, but also caregiving, a topic we can all freely talk about.

The stigma and misunderstandings of both Alzheimer’s and caregiving open us up to misguided suggestions that can hurt more than help. When you are a full-time caregiver, you have little to no time for yourself. Well-meaning friends and acquaintances often say to “take care of yourself first.” I found it hard not to cry, scream and/or laugh every time I heard this advice. I grew to despise those words. They made me feel more alone – proof that no one understood what it was like caring for Mom.

However, I also grew to understand that taking time doesn’t have to be a physical act as I first imagined, but it can be a mental act. My photography often shows what can seem to some a lonely place, but to others a place of solace. Our perceptions can be foggy in the trenches of caregiving. You can feel trapped by circumstances, but they can also be a place of introspection and an opportunity for a connection beyond words that is simply love.

My time of reflection led me to discover that we never really have control. Therefore, I was able to not only accept – but embrace – the changes that are inevitable in Alzheimer’s. The minute-by-minute changes, as well as the daily, weekly and monthly changes. And the big change, the one that Alzheimer’s always leads to, because there is no cure.

But there is, if not a cure for the loneliness of caregiving, at least good medicine — sharing our stories openly with each other, without censure or shame. There’s a whole community out there waiting to talk about the grief, the pain and the hardships that are part of this devastating journey.

When I began Alzheimer’s: Beyond Caregiving, I knew I wasn’t alone in my challenges and concerns of caregiving, but the greatest validation came in this comment: “. . . this book is like sitting down with a friend who knows what it’s like.” I couldn’t have put into words what I wanted the take away of this book to be, but that is it.

About the Author:

Miki Klocke is a photographer and author. Her images mirror what is going on in her heart and soul. During her 17 years of taking care of her mom, her images reflect a lonely time, an introspective time, a longing for peace and solitude . . .


Instagram: @AlzStories

Alzheimers: Beyond Caregiving is available on Amazon.

Wednesday, May 16, 2018

Meet Vicki Tapia, AlzAuthors Admin and Author of “Somebody Stole My Iron”

Reposted with permission from AlzAuthors.com


By Vicki Tapia

In 2004, both my parents were diagnosed with dementia, Dad with Parkinson’s-related dementia and Mom with moderate Alzheimer’s disease. Even though symptoms had become increasingly obvious by the time of diagnosis, hearing the words dementia and Alzheimer’s disease really knocked the wind out of my sails. We now faced the stark reality of terminal diagnoses.

Trained as a teacher and looking for answers, I sought information to describe what to expect and how to best navigate what lay ahead. I searched for books written from the family caregiver’s perspective, but found few, and none that actually proved very helpful. I could cry on my husband’s shoulder or unload my anxiety on a close friend only so often. In a deviation from my usual handwritten journals, I began tapping away at my computer keyboard on a near daily basis.

When I began writing about dementia, it was merely a vehicle to help me cope with family caregiving. My diary became the place I sought solace at the end of a long day. It didn’t talk back or demand anything of me. However, after a year or so of writing, an awareness slowly took shape inside my brain and I realized I was in the midst of writing a book. I began to recall memories of Mom’s dementia-like behavior from years previous and it amazed me how many recollections remained vivid in my mind. Scene after scene from both the past and present came alive on the computer screen.

I continued to write and refine my memoir over the next several years. All told, nine years passed from the time I started to write and publication of Somebody Stole My Iron. This includes ignoring the manuscript for nearly three years during a fierce internal battle that raged within me between sharing the story or protecting our family’s privacy.

During that time, parents of three different friends received an Alzheimer’s diagnosis, so I offered each of these friends my manuscript. All gave positive feedback and encouraged me to seek publication. I finally realized that despite my trepidation, someone needed to speak up and be the written voice I couldn’t find during my parent’s journey.

Publication has brought me bountiful blessings far beyond sharing our family’s story with others. I have been fortunate to have had the opportunity to speak about dementia awareness in many different venues in my city and the surrounding area. I have encountered readers from around the world who have offered feedback that my shared lessons have also been helpful for them. Through social media, I have become friends with authors of other books about dementia. In 2015, Jean Lee from Ohio and Marianne Sciucco from New York joined together with me to cross-promote our books. And from this collaboration sprung AlzAuthors. There is no way I could have predicted that writing a diary about my struggles to cope with my parents’ dementia would blossom into friendships across the globe and lead me on a mission to educate and provide resources for others affected in some way by dementia. I truly believe all the AlzAuthors are part of a wave that will help to end the stigma associated with this devastating disease.

About the author:

After teaching somewhere around 10,000 mother/baby pairs the art of breastfeeding, Vicki found her energies redirected to the other end of life, after both parents were diagnosed with dementia. A diary written to help her cope with caregiving morphed into Somebody Stole My Iron: A Family Memoir of Dementia. This memoir was a finalist in the 2015 High Plains Book Awards.

Vicki’s second book, Maggie: A Journey of Love, Loss and Survival, is a tribute to the intrepid life of her great-grandmother, written in remembrance and recognition of a time when women had few rights. In a different time, Maggie might have been part of the #MeToo movement.

A co-founder of AlzAuthors, Vicki wishes every dementia caregiver had access to the AlzAuthors Bookstore and looks forward to the day when Alzheimer’s is no more. When not busy writing, you are apt this native Montanan out walking her dog or off on an adventure with her husband on their tandem bicycle.