From the AlzAuthors Blog: Meet Jane Mullins, author of "Finding the Light in Dementia, a Guide for Families, Friends and Caregivers"

By Jane Mullins Ph.D., from Cardiff, U.K.

I am a nurse who has worked with people who have dementia for over 25 years. This has included nursing in a care home where I have helped support people during their transition from home. This has included finding out about their life stories and getting to know them, working together in understanding their past, identifying their present needs and future wishes. 

I have also cared for people who have dementia in hospital and seen the impact that an admission can have on the person and their dementia. Here, I recognised the importance of involving families and keeping familiar meaningful objects with them when in unfamiliar places.

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.

From the AlzAuthors Blog: Paul Toolan and “The View from Memory Hill,” a Collection of Short Stories

By Paul Toolan

I live in an English rural village with a demographic weighted towards retirees. I’m one of them, I suppose.

There are young people too, but older bodies tend to fill the shops and the midday streets. I find myself reflecting on these sometimes solitary folk, about their past lives and the people they’ve known. Have they forgotten more than they care to remember – or just forgotten?

From the AlzAuthors Blog: Angel Smits, Author of "When Reasoning No Longer Works"

By Angel Smits

How does a romance writer end up writing a book about Alzheimer’s care? That question nearly stumped me, not because I don’t know how—I lived it—but because it’s a lot bigger question than it seems.

I’ve always written, always played with words and stories—ever since I was a kid. And romance has long been one of my favorite genres to read as well as write. It was a natural path to write romance when I started to focus on my fiction.

From the AlzAuthors Blog: S.R. Karfelt, author of Nobody Told Me - Love in the Time of Dementia

By S. R. Karfelt

Writing about memory loss wasn’t something I’d planned to do. I’m a fiction writer. But when my mother-in-law could no longer live on her own she moved in with me and my husband, her son.

That same husband and son had to go work in Asia soon after she arrived, leaving me alone with Gummy for a short but difficult while. His parting words were, “Do whatever it takes to survive it.”

What do writers do to survive? They write.

Even then I didn’t plan to write a book. I had my next fiction book lined up. My grand plan was to get Gummy settled, on medication, and used to her life here. Then I’d get back to writing. I’d blocked off a couple months to accomplish this.

Is it even possible to get someone used to losing their memory? I was so young and naïve last year. Gummy couldn’t remember where she was or why. She packed to go and asked questions non-stop until she’d drop from exhaustion, and later wake up panicked and deep into sundowning in the middle of the night.

At some point I wrote a desperate post on Facebook. The tsunami of support that came from others who were going through the same thing, or had, surprised me. It helped knowing I wasn’t alone. I continued writing about Gummy privately. Eventually I told my publisher the expected book wasn’t going to happen. I could barely take the time to go into the bathroom alone, let alone write.

       Saffi? Saffi? Where’d you go?

             I’m in the shower, Gummy! I’ll be right out!

       Hello? Is anybody here?

From the AlzAuthors Blog: Richard L. Morgan, PhD

by Richard L. Morgan, PhD

Listening to the needs of caregivers as a facilitator of Alzheimer’s support groups for many years, I became aware that care giving and receiving are opportunities for mutual spiritual growth.

Collaborating with gerontologist, Jane Thibault, Ph.D., we wrote, No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia. It is our belief that caregivers have two basic needs: affirmation that caregiving is not in vain, and reassurance that the lives of those for whom they care are not being lived in vain. We also believe that care receivers need more than medical attention; they need tender care, involvement in the community, and a sense of connection with a loving God.

This book, based on personal stories of caregivers and receivers, shows how each plays a major role in acts of love that bring transformation to both. Our perspective is that caregiving is an extension of spiritual life, and we hope our book will aid families and professionals to look beyond day-to-day routines and chores and accept their role as an opportunity to serve the total person in body, mind, and spirit. We offer suggestions for the spiritual care of persons with dementia, and helpful tips for leading support groups and worship services for persons with dementia. Our goal was to move beyond the medical model of care and provide the missing piece for caring for persons with Alzheimer’s or other forms of dementia. No act of love is ever wasted as every act of love brings positive transformation to the recipient, to the giver, and to the world.

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

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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.”

AlzAuthors: Cynthia Toney, author of 10 Steps to Girlfriend Status

By Cynthia Toney

Alzheimer’s is a cruel prison that held my dear mother-in-law in chains for approximately three years, taking her freedom and her mind until it finally took her body. I understood little about the disease before watching a once brilliant, witty, and loving lady wither before my eyes.

I was shocked by how quickly my mother-in-law forgot how to communicate with me and then forgot who I was. We’d had so many interests in common that our conversations had always been easy. I missed her intelligence and laughter, and she no longer spoke the customary “I love you” in parting. But if I was saddened and worried by her condition, my husband and his brother were devastated. They had to learn to manage the life of the matriarch who’d always done the managing for our family and had handled it as well as she had her jobs as a bank vice-president and a high-level position in state government.

The emotional toll that this reversal of fortune for her had on the rest of us needed to be fully expressed. I decided to write about Alzheimer’s and its effects on both victim and family by using one of the characters in my fiction series for teen girls.

Mrs. Villaturo first appears in book one, 8 Notes to a Nobody. She is the healthy, elderly next-door neighbor of my main character, Wendy, who is a young teenager. Mrs. V (as Wendy calls her) becomes a surrogate grandmother to the girl, who grows to love her neighbor. In book two, 10 Steps to Girlfriend Status, Wendy is in high school, is forming a romantic relationship, and is becoming part of a blended family. During the changes all this brings, she discovers something wrong with her beloved Mrs. V.

AlzAuthors: Daniel C. Potts, Physician, Poet, Writer, Alzheimer's Son

My Colors Came Alive

By Daniel C. Potts, MD, FAAN

"The true worth of a (person) is not to be found in (that person) him/herself, but in the colours and textures that come alive in others." - Albert Schweitzer

My motivation to write about Alzheimer’s disease and other dementias was my father, Lester, an artist who had Alzheimer’s. A neurologist and only child, I found myself struggling in a dark place in 2002, just after my father’s diagnosis. I felt like a restrained bystander bearing witness to a crime I could do nothing about.

As strange as it may seem, caregiving skills were not taught in medical school. Thorough knowledge of the pathology and clinical manifestations of Alzheimer’s was not helping in the day to day challenges being faced mainly by my mother, Dad’s primary caregiver. I felt I didn’t know enough to help. Seeking the best opportunities possible to support Dad, we enrolled him in a wonderful adult daycare center, Caring Days in Tuscaloosa, Alabama, and immediately Dad’s affect brightened and behavior and interaction skills improved. This was largely due to the validating, dignifying care he received there.

Then came the art. A volunteer artist with a knack for sharing his gift came to work with the clients, and Dad showed a previously unknown talent for artistic expression. Over four years, he painted 100 original watercolors. His creativity was transformative not only for him, but for all those around him. It seemed the spirit of the very one with the disease was lifting the spirits of all of us.

I remember waking in the early morning hours of January 1, 2006 with a poem in my head. Writing it feverishly, I then read what seemed unfamiliar words. Yet I recognized its beauty, and shared it with others. Thus, began my exploration of a newly found gift. This gifting had been kindled by Dad’s art, causing colors and textures to “come alive in others," as Dr. Schweitzer describes.

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: Cathie Borrie and The Long Hello

By Cathie Borrie 

In an almost Zen-like poetic form, my mother revealed the changing landscape of her mind: 

“Listen, Cathie . . . a bird!” 

“What are the birds saying?’ 

“They’re chirping.” 

“In a language?” 

“In their language. In an upside down language.” 

She expressed an imaginative, artistic perspective many times during her experience of living with Alzheimer’s, and her comments were so often full of insight, humor, and an astonishingly poetic sensibility that I started to tape our conversations. Between us, a wondrously poetic dialogue developed, which I further illuminated with childhood memories of our family and my struggle to maintain a life outside caregiving responsibilities. 

I pursued the writing because I felt the world needed to hear her voice. Needed to know that people with Alzheimer’s are stigma-busters. She was not an empty shell, there was no long forgetting of her, she was not my long goodbye. 

“What do you think about the sky?” 

“Oh, I don’t know about the sky . . . I don’t really know about it. But you have to wear gloves because it puts fingerprints on it–and you don’t want that.” 

Cathie Borrie

Although I had two publishers who were interested in presenting The Long Hello as a work of fiction, the book took the form of a memoir–where would be the stigma-busting if it was a fictional account? It was her magical voice, weaving throughout the book, which I loved so dearly and wanted to share with others. Amidst many unhappy moments, as there are with any neurological chronic disease, she shone a much needed light on the experience with a hopeful perspective. 

The feedback on the book from noted writers and Alzheimer’s experts like Maya Angelou and Lisa Genova has been rewarding, and I have been heart warmed by responses from the dementia community who welcome the verbatim voice of someone living with Alzheimer’s. The lyrical, poetic form of the work seems to appeal to people looking for something other than a “how-to” book. I think our story “shows” rather than “tells.” 

“Cathie was up here and she said to me, ‘Mum, I’m not going to offer to give them my shadow.’” 

“Really? Where was this?” 

“Somewhere . . . on the other side of here.”

***

Purchase The Long Hello

Connect with Cathie Borrie

Website

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Twitter: @cathieborrie

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.