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: 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.

Valentine's Day Romance eBook Sale February 10th-14th

In honor of Valentine's Day, that special day celebrating all that's romantic, I've teamed up with fourteen romance authors  for an ebook sale. Choose from all kinds of new and not-so-new releases, from your favorite romance genres: time travel, historical, billionaire,  new adult, contemporary, and romantic suspense. Some are sweet, some are steamy, and some are just 99c, including Blue Hydrangeas, which was recently added to Kindle Unlimited.

 Sale runs February 10 through the 14th

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: 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

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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.