From the AlzAuthors Blog: AlzAuthors Books are Setting Sail on a Dementia Friendly Alaskan Cruise!

During the week of September 15 - 22, 2018, a cruise specially designed for caregivers and their loved ones living with early-stage dementia is setting sail for Alaska, aboard Holland America's Signature-class cruise ship, MS Eurodam. AlzAuthors is thrilled to be supporting this wonderful trip!

This adventure is a unique CRUISE and CONFERENCE all in one. Families will sail round trip from Seattle, Washington with Elite Cruises and experience the beauty of Alaska with stops in Juneau, Glacier Bay, Sitka, Ketchikan, and Victoria, Canada.

Families will also experience diverse programming during an immersive conference that takes place onboard. This includes: Healing pain and grief through sharing their stories; adapting homes for dementia; creating care partnerships; nutritional care for caregivers and their loved ones; and much more. The cruise organizer, Kathy Shoaf, has put together a wide range of programming created for the complex daily lives of those living with dementia and their care partners. Plus, families will be spending time with others who share many of the same joys and sorrows, providing an opportunity to build new friendships too. Vacationers will return home with a renewed spirit, reconnected to joy and ease in their daily life.

Alz Authors: Niki Kapsambelis, The DeMoe Family, and "The Inheritance"

By Niki Kapsambelis

On a drizzly April day in 2009, I walked into a hotel suite in downtown Pittsburgh to meet members of a North Dakota family stricken with a rare genetic mutation that guarantees early-onset Alzheimer’s disease. 

My life changed profoundly that day. Up to that point, I knew precious little about Alzheimer’s. I was a journalist on assignment for the University of Pittsburgh, whose Alzheimer’s Disease Research Center had been studying the DeMoe family for a few years. I was stunned by the magnitude and extent of their courage. Here was a family straight out of middle America, committing itself across generations to serving as research subjects for the most baffling disease of this generation. What science had not been able to solve in more than a century, the DeMoes vowed to defeat – or die trying. 

Just as Alzheimer’s has been a formidable enemy hiding in plain sight, here now were its heroes, living next door in relative obscurity. Nobody knew what they were doing, save a few close friends. I wanted to change that. 

My book, The Inheritance, took five years to research. Not only did I track multiple branches of the family across different states, I also had to retrace the history of the disease from Alois Alzheimer’s discovery in 1906 to the human clinical trials of today. In the process, I met several brilliant people I now consider friends, and was awed by the depth of their commitment.

I also gained a family. The DeMoes were more than any journalist could ever hope for: honest, charming, forthright, and welcoming. Their trust in me was at times overwhelming, and I felt an acute sense of responsibility to be worthy of that trust and to tell their story as faithfully and completely as I could. Not all of the people who started this journey with me lived to see its conclusion, but I felt their presence keenly as I wrote. I was there for births, deaths, weddings, graduations, divorces, goodbyes and new beginnings. I celebrated with one young woman as she learned she did not carry the mutation, and I delivered the eulogies at two funerals for those who did.

As each surviving family member held the book in their hands, I sensed that my task was complete, but my journey was only beginning. Through the sacrifices of this family, I hope to educate the world about the public health crisis we all now face, and inspire them to come together to finish what the DeMoes – and others – have started.

About the Author

Niki Kapsambelis’ work has appeared in publications around the world, including the Washington Post, Los Angeles Times, People, and the Associated Press. A native of Boston, she now lives in Pennsylvania. The Inheritance is her first book.

Connect with Niki Kapsambelis

Website

Twitter at @nikikaps

Facebook

AlzAuthors: Susan Kiser Scarff and Ann Kiser Zultner, authors of Dementia: The Journey Ahead - A Practical Guide for In-Home Caregivers

by Susan Kiser Scarff

Within a year of my husband receiving his dementia diagnosis, I had a classic case of caregiver burnout. I couldn't concentrate at work and most of my time was taken up with worrying about my husband's uncharacteristic and impulsive behavior. I was petrified and intimidated about the future…overwhelmed with basic day-to-day activities. Further, I was apprehensive about making the transition from wife to protector, nurse, and mother.

At the suggestion of a health professional, I began documenting the daily struggles of caregiving. After my husband passed away, I realized my daily journaling could be modified and turned into a valuable and timely resource for other caregivers in similar situations. Writing the book, and in turn helping others in similar situations, helped me to feel that my husband’s illness and my own caregiving struggles were not in vain. Something positive was able to come from the horrific disease called Dementia. Hopefully, the book, written with the help of my sister, Ann Kiser Zultner, will help fill in the huge gap between medical and in-home care for dementia patients.

AlzAuthors: Suzka Collins, Wonders in Dementialand

By Suzka Collins

Ah… the wonders I found living with my mother in Dementialand. It all started almost minutes after she was diagnosed with progressive dementia. The cause was meningitis encephalitis. There seemed to be no choice at the time. I had to leave my bohemian life in the art world in California to return to a Chicago suburb where my mom was living. I am a painter. This had all the markings of a disaster.

After four years living in Dementialand, I returned to California and remember my friends telling me how sorry they were, how horrible it must have been and what a great sacrifice I made taking care of her. I hadn’t a clue what they were talking about. For me, I was on a crazy cruise of chaos and enchantment. I had to write a book. Dementia was getting a bad rap.

AlzAuthors: Ann Hedreen and "Her Beautiful Brain," a memoir

By Ann Hedreen

Without quite knowing it at the time, I began working on Her Beautiful Brain in 2004, when my husband and I made an award-winning documentary film about my mother called Quick Brown Fox: an Alzheimer's Story, which has had a long life on PBS stations and remains in distribution through Women Make Movies, Amazon and other sites. Making Quick Brown Fox made me realize there was so much more of my mom's story to tell than our film could contain. I also began to understand that, while I love filmmaking (which is what I do for a living), I have been a writer since I could hold a pencil and I longed to write much more than I was then writing as a filmmaker and occasional journalist.

In 2008, the incredible gift of a two-week residency at the Hedgebrook retreat for women writers got me going, and the Goddard MFA program, which I completed in July 2010, kept me going on what became a book-length memoir.

Her Beautiful Brain is the story of my mother, a copper miner’s daughter who was divorced twice, widowed once, raised six kids singlehandedly, got her B.A. and M.A. at 40 so she could support us as a Seattle schoolteacher—only to start showing signs of Alzheimer’s in her late fifties, taking us all on a long descent we never could have anticipated or imagined.

AlzAuthors: Peggy Bushy and Lewy, Mom and Me:A Caregiver's Story

By Peggy Bushy

When Lewy Body Dementia entered my home, the world as I knew it began to shift, and I found myself in a constant state of confusion. My sweet mother, who lived in our home, was hallucinating, her stories and behavior were becoming more and more bizarre, and I had no idea why - neither did any of the doctors I consulted. Lost and alone, I could feel myself becoming a little more unglued with every passing day while I watched the family rules fly out the window one by one. "Wait! I depend on those family rules." They may not be the same as the neighbor's rules but they're mine, they've been mine forever, and I'm comfortable with them.

Written or unwritten family rules become our guidebook. Even as adults when we partner up with someone else who has a different set of rules, it doesn't take long before we meld them together and find comfort and harmony with the new set. When dementia crept into my life and disorder began to rear its ugly head, my home felt like a foreign country and I didn't speak its language. Confusion and disorder visited before. I was used to a little fracture here and there in my routine. My feathers got ruffled, I talked about it, or researched it, and sometimes received a remedy for an outside source. This time, as hard as I looked I couldn't find a single answer and it wasn't long before all hell broke loose and my harmonious routine turned into anarchy. That's when I joined a support group and the company of others. That's when I learned I had to think outside the guidebook.

My mother was diagnosed with Lewy Body Dementia years after my search for answers and years after family harmony fell apart. After a few weeks of processing the information, I looked for some comfort in a book. I found a few books related to the topic but they were all medical or clinical. I wanted a memoir. A book that would make me laugh, cry, relate, and feel not so alone. Having found nothing, I gathered up my years of journals, and wrote one.

AlzAuthors Alzheimer's and Brain Awareness Month eBook Sale!

AlzAuthors was founded in 2016 by myself and three other daughters of dementia who met over the internet because of our books. We formed a friendship and a mission to create a space where caregivers can find solid support, and those who share their stories can find the proper audience. I'm proud of our work and how we've grown from a 30-day awareness mission in June of 2016, to a weekly blog showcasing books and blogs about Alz and related dementias, a bookstore, Facebook group, and active Twitter presence.

You may have heard that June is Alzheimer's and Brain Awareness Month, and today, June 21st, is The Longest Day. Sponsored by the Alzheimer's Association, these important events increase awareness of Alzheimer's, related dementias, and brain health. In recognition of these events, AlzAuthors has put together our very first eBook sale!

Starting June 21 through June 28, you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from 2.99 to free. We offer a variety of genres, from fiction, memoir, and non-fiction. Many of our books are also available in paperback and audio, so check them out too.

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.

Enter the AlzAuthors eBook Sale!

AlzAuthors: Rebecca Thesman - How a Long-Distance Caregiver Learns to Cope

By RJ Thesman 

When the memory thief first visited our family, we didn’t think much about it. Mom was, after all, fully capable of caring for herself and she was in good health.

But gradually, ever so subtly, the memory thief began to take from her the basics of life: where she stored her pots and pans, how to read a recipe and produce the finished product, how to find her way home from the grocery store.

The resulting prognosis surprised and challenged us. Alzheimer’s Disease plus an inoperable brain tumor – no cure, no solutions. Mom could no longer stay in her home.

My siblings and I worked together, hoping for an easy transition, but Mom has always been an independent, stubborn woman. It was the doctor who had to be the bad guy as we took away her car keys, “The doctor says you can no longer drive,” then, as we found a beautiful assisted living facility, “The doctor says you cannot live alone.”

Meet Cynthia Hamilton, author of "Finding Ruth"

By Cynthia Hamilton

It took a life-altering crisis to make me realize that despite having known my mom for 50+ years, I didn’t know who she was as a person in her own right. I had firsthand knowledge of many of her trials and heartaches, but that only gave me a one-sided view of what her life had been like, with many gaps.

Nothing I knew about her had prepared me for what I found prior to her move into a nursing home. In the process of rummaging through eight decades of possessions, I came across an old photo album under her bed. As I opened it, an insert slid out, revealing a photo taken when she was 19 years old. The sight of her hamming it up for the photographer, so happy and confident, completely knocked me for a loop. Who was this person? Why didn’t I know anything about that time in her life? How could I know so little about my own mother?

AlzAuthors: Elaine Pereira, I Will Never Forget

By Elaine Pereira, MA OTR/L CDC DP

My mother’s was a story that needed to be told. She was a kind, brilliant and talented woman all of my life until dementia took hold distorting her persona and leaving an agitated, bewildered and compromised person in its wake.

In what would be her final months, as my mother continued her rapid descent into Alzheimer’s clutches, her once strong voice faded away. Our quiet visits together afforded me the opportunity to reflect on the vivacious life that defined her. I was determined to remember her as the strong, courageous and gifted lady who was my mom.I Will Never Forget was written in tribute not only to my mother but to everyone going through this struggle. Too many sons and daughters have witnessed their parents’ very essence evaporate as their memories are chipped and chiseled away. My mother’s story is everyone’s story. I simply chose to put in black and white the colorful stories of her life for all to remember.

I was not a full-time caregiver for my mother. She had made it crystal clear that she never wanted to live with her “kids” if she could no longer care for herself, even when her “kids” were whittled down to one - just me - after the premature deaths of both of my brothers.

Regardless of whether you’re caring for a loved one at home or allocating daily care to an assisted living facility, Alzheimer’s leaves a permanent mark on everyone. You are forever changed, no matter how you experience the journey.

AlzAuthors: Rachel Wonderlin, "When Someone You Know Is Living in a Dementia Care Community"

By Rachael Wonderlin

I started my blog, Dementia By Day, three years ago. I had no idea, then, that it would become such a huge part of my life. At the time, I was working for Brookdale Senior Living in North Carolina. I had just finished my Master’s degree in Gerontology at UNC Greensboro, and I was thrilled about my first full-time job in dementia care. My title was “Memory Care Program Manager,” but I did a lot more than manage the activity department. I helped to redesign the community’s look and feel. I completely redesigned the calendar. (In fact, I checked online, the current calendar is still very similar to the first one I made!)

I loved working there, and my friends and family enjoyed hearing my stories about dementia care. “You should write a book,” people kept saying. I had always wanted to write a book, but I never pictured it would be a book on dementia care. Finally, I decided to look into it. Instead of publishing it myself, which was my first plan, a professor from my alma mater told me to look into professional publishers. Johns Hopkins University Press was very interested in my book because they have found much success with their book, The 36-Hour Day. My book is designed as a companion piece to The 36-Hour Day, and I am very proud of that fact.

AlzAuthors: Gela-Marie Williams, author of Green Vanilla Tea

By Gela-Marie Williams

I remember the evening my youngest son came to me in my bedroom holding a rather dog-eared manuscript of Green Vanilla Tea. I had worked on this family story with my two boys over a few years. I’m not sure how many, exactly. We simply worked on it until we’d tussled with it enough and one day it was done. My son leaned against the doorframe, favouring one leg as his dad would have done. I remember noticing how much space he took up in the doorway. No longer the boy he was when this story all began, but a strapping 19-year-old. He was the age I was when I met my husband, the man readers would later get to know as Dominic. I thought he might ask what was for dinner. Like most teenagers, he was perpetually hungry and ate more than I thought humanly possible. But he said,

“Thanks Mom, I think this will be the most powerful story I’ll be able to share with my life partner one day.”

I leaned back against my pillows and thought, Wow, we did it; my job is done.

The manuscript my son held in his arms is a story I wrote that followed our family journey though Dominic’s illness with Younger Onset Dementia and ALS/MND. Dom died in 2007 aged 45. There is heartache and there is humour. But at its core, Green Vanilla Tea is a love story. A story of love and life in a world where so much was amiss, written as an offering of hope to my two [then] teenage sons.

My writing started out as a spontaneous, creative response to grief, with no thoughts of placing this part of our life on display. Amidst the demands of caring for Dom and parenting my sons, writing kept me anchored. It held still the paradox, where life was both empty and full, together and falling apart and the simplest things were the most extraordinary. I wrote of love and loss and finding hope in inexplicable times.

After Dom died, I collated my musings together for the boys. Dementia in a young person is a slippery beast. So much of what they experienced felt invisible and without words. They asked me to write our story. To “try and capture it somehow” and “give it form.” We had no intention to publish. It was enough that my writing provided a wonderful launching pad for rich conversations with my sons.

AlzAuthors: Susan Suchan - Advocate, Writer, Voice of Dementia

By Susan Suchan

When I look at the faces of my grandchildren and see the joy and blessing that they and my family and friends bring to me, I am determined to share this dementia experience! They love me just the way I am.  What may at times look or sound silly, different or even disturbing, is explained and discussed, so we all work together, bringing mutual joy and learned compassion for the best quality of life, for everyone involved.

When I was first diagnosed with FTD/PPA (Frontotemporal Dementia/Primary Progressive Aphasia), I was scared by what I read that was written by scholars about the outlook or prognosis of this disease. No treatment, no cure, and possibly living in a Memory Care Unit. I desperately wanted to hear from someone actually living with the disease and how they were managing. I found those people in a secret Facebook group, the AFTD (Association for Frontotemporal Degeneration), the Dementia Mentors web page, and even the Alzheimer's Association. I was validated! I mourned the diagnosis and then quickly realized that I wasn't going to die in the near future. I set out to share my experience, so that others would have access to that same validation and assurance I had found. Fear is immobilizing.

Writing and speaking publicly gives me a purpose, as well as helping to break the stigma that all dementia is not Alzheimer's. Writing and speaking also educates those unfamiliar with dementia and opens conversations. I am always touched when others respond with questions, new ideas, understanding and compassion. I am reminded that living with a diagnosis of dementia is different for each individual, but carries many similarities. I have come to learn that it takes a village to maneuver the experience of dementia.

AlzAuthors: Interview with Novelist Kathleen H. Wheeler

 

By Kathleen H. Wheeler

Why choose Alzheimer’s as the focus of my new family saga novel Brought To Our Senses?

It’s a fair question. After all, Alzheimer’s is argued to be the disease feared most of all. The mind-robbing illness has a bad reputation and a stigma-stifling discussion in mixed company. So why exactly would I tackle such a difficult subject, one so many avoid altogether or shrug off as hopeless?

The answer is simple: it’s personal.

Alzheimer’s has forever changed my life, an existence now measured in two distinct periods of time: BA and AA. “Before Alzheimer’s” was my life until 1996 when dementia came calling for my mother with a vengeance. She was only 62, and I was 30 with a newborn daughter at home. “After Alzheimer’s” is the last twenty years I’ve spent raising two children and dealing with my mother’s diagnosis, decline, and death from this monster.

My mother passed away in 2009 but dementia lingers like the familiar nightmare waking me in a cold sweat. I’ve never faced anything more devastating. Like it or not, Alzheimer’s has wormed its way into my life thanks to genetics. I am susceptible, as are my siblings and children, and this reality drives my waking hours and efforts.

Advocacy Through Narrative

Because dementia is now a part of my past and future, I wrote a fictional story about Alzheimer’s to raise awareness about the disease and to rally families for the fight. Brought To Our Senses stresses the importance of family relationships and the healing power of forgiveness. When it comes to dementia, it’s crucial for family members to get along and support each other through years of difficult decisions and heartbreaking predicaments. Most modern families harbor grievances of some sort, but these issues pale in comparison to life and death matters like aging parents and Alzheimer’s.

AlzAuthors: Krysten Lindsay Hager - How Young Adult Fiction Helps Heal and Educate

By Krysten Lindsay Hager

After my dad passed in the summer of 2015, I was sitting on my couch watching TV when I got a message from some readers asking what happened next for my characters Nick and Hadley from my book, Next Door to a Star. I was in my grief bubble, and this email was a welcome bright spot letting me know someone cared enough about the characters to want to know their future. I thought writing about what happened next might be a way to get my mind off grieving. It was when I got to sixty pages that I realized I might have a book. 

I was working on it when I took a break to go to the grocery store where, once again, I spotted tabloid covers about Robin Williams. The headlines always said things like, “Terrifying Disease,” “Agony,” “Torture,” “Sad Last Days,” “Rapid Decline,” or the quote from his wife describing Lewy Body Dementia’s effects as a “swift persecution.” Every time I stood in line and saw these headlines, I would begin to physically react. At best, I would get anxiety; at worst, I feared I was going to pass out in line. These weren’t just headlines to me—these were the last few years of my life watching my own father go through this and not understanding the diagnosis until Robin Williams’ autopsy came out. Even then, all we got was the understanding of why Dad went under anesthesia and woke up with a different life—one where he could no longer walk and no one knew why. One where he was confused and for some reason sliding out of bed. Overnight his life had changed. Parkinson’s took over his body and these headlines served to remind me just how bad things had been. 

So on that day, I walked out to the parking lot and it hit me—if we didn’t understand the initial diagnosis, how many other people were dealing with it—or worse— and seeing the same headlines I did, which filled me with fear. I thought maybe I could use my experience to bring awareness to a disease that people know little to nothing about. 

AlzAuthors: Ann Campanella Shares Her Story of Motherhood and Dementia

by Ann Campanella

In my early 30s, I learned that life can change direction when you least expect it. My husband Joel and I had moved from Houston to North Carolina in order to be closer to my parents. We both had successful careers – he as a businessman and me as a writer and editor. We were looking forward to building a barn for my horse Crimson and excited about starting a family.

Life was humming along. Then I had my first miscarriage at the same time my mother began her slow spiral into Alzheimer’s. Motherhood: Lost and Found tells the story of losing my mother while I was trying to become a mother and suffering through infertility. For almost a decade, I walked a painful path of questioning who my mother was becoming and if I would ever be a mother myself.

Most of my friends had children of their own and spent their days caring for them. I was thrust into the role of caretaker for my parents, while I yearned to focus on my own children. My mother had always been kind and compassionate, so it was a shock when she wasn’t able to comfort me in my pregnancy losses.

AlzAuthors: Molly LeGrand and The Upside of Aging

By Molly LeGrand

I’ve worked in Long Term Care as an Activities Assistant for ten years. This role has offered a unique perspective on Alzheimer’s as I typically will meet the person after a diagnosis. And just like I would with a new friend or colleague, I begin to get to know them, and I get to know them with Alzheimer’s.  I was fortunate to start my career in the aging services with a mentor dedicated to the teaching of resident’s rights and the promotion of quality of life. These concepts have become my foundation as I grow in the field.

My motivation to write about Alzheimer’s is personal.  This diagnosis can be an extremely emotional time not only for the person but also their family and loved ones. I saw writing my blog The Upside of Aging as an opportunity to not only join in on a well-established conversation but as a possibility to share my more positive experiences with people living with Alzheimer’s.   I don’t offer medical advice, but I do hope to bring some clarity to an often misunderstood disease.

AlzAuthors: Wayne Evans' Music Ministry "Let's Sing From Memory"

by Wayne Evans

I’ve never had a family member diagnosed with Alzheimer’s, nor have I been a caregiver. I didn’t even know much about the disease until recently. But now I have a “new family” of over 20 people with Alzheimer’s, in addition to their loving caregivers.

My “new family” began in March of 2014 when, with a team of 20 volunteers, I started a ministry called “Let’s Sing From Memory.” This is a community outreach social gathering, held twice each month at Christ United Methodist Church in Chattanooga, TN. People with Alzheimer’s or other dementia, who are living at home, attend with their caregivers and other family members for fellowship and group singing of familiar old songs and hymns.

While on a work assignment in England in 2009, I watched a BBC TV documentary called “Wonderland: The Alzheimer’s Choir.” It featured an outreach program called "Singing for the Brain," sponsored by the Alzheimer’s Society in the UK. I was fascinated as couples spoke about the social support and told how singing renewed old memories and even had an effect on their communication after they returned home. The

documentary was my introduction to Alzheimer’s Disease and as it touched my heart, I knew that I wanted to find a way to help.

AlzAuthors: Paula Spencer Scott, "Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers"

By Paula Spencer Scott

I knew little about dementia back when my grandmother began using a kitchen pot for a commode. Or when my dad began wailing, "Oh why didn't anyone tell me?" on the day after my mother's funeral, because he'd already forgotten she died.

So how did I wind up writing a guide to Alzheimer's care? I followed the motto I've used for my entire career covering health and family for national media: “Write what you DON’T know.”

That's how you find out.

Back when firstborn balked at toilet training, I was lucky to interview Dr. Benjamin Spock himself. As a contributing editor of Parenting and Baby Talk while I raised four kids, I quizzed gurus-of-the-moment like T. Berry Brazelton, Richard Ferber, Sheila Kitzinger, and Penelope Leach. I tracked down researchers behind the latest studies for my Woman’s Day "Momfidence" column. I wrote a parenting book series for Time Inc. and The Happiest Toddler on the Block with top baby doc Harvey Karp.

It’s what I do: Find the best experts, ask the right questions, listen, and then organize and share their ideas in ways that help laypeople.

AlzAuthors: Sharleen Scott, Tangles

by Sharleen Scott

Her name was Judy, and I married her son. 

She was a Depression-era child who grew up in the Pacific Northwest forests, traveling with her grandfather’s logging company. She was an outdoorswoman who loved fishing, hunting, and hosting friends and family at her Cascade mountain cabin. 

She married Paul at age seventeen, but was separated from him soon after by the bombing of Pearl Harbor. While he operated the radio aboard a PT boat supply ship in the Pacific, she was the embodiment of Rosie the Riveter, making airplane wings in Spokane and welding in the Bremerton shipyards. When he was called up again during the Korean conflict, she packed their belongings in the car and shipped it to Adak, Alaska, on a ferry so she and her daughter could be with him for the duration. After the war, their son was born, and the family was complete.

She was a Campfire Girls leader, a women’s club member, and active in the Grange. She was a crew supervisor in a fruit-packing warehouse, and when she retired, she began to forget things. She’d laugh and say, “I’m not working anymore. I don’t need to think.” The memory loss escalated and ultimately the diagnosis was Alzheimer’s disease. It was the late ’90s, and we didn’t know much about the disease other than Ronald Reagan had it.