Meet Daniel C. Potts, physician, author and dementia advocate

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.

Writing helped me immensely as Dad’s condition progressed, and seemed to give meaning to what was happening. It also provided a source of inspiration and hope for others in similar circumstances, and has continued to do so over the years. I truly feel that writing has made be a better physician, one with more empathy and compassion. I am a better listener, because I have learned to listen to the deepest parts of myself.

In my writing, I often attempt to place myself in the shoes of the person with dementia and speak in what I perceive to be their voice. While I know I cannot begin to understand what it must be like, I feel duty-bound to try, and to give voice to those who perhaps are being silenced by the disease.

Mostly what I feel when I write is gratitude for the opportunity we were given to see Dad’s spirit soar because someone cared enough to believe that he was still present, that his soul still sang despite the disease. Having heard the song, I want to sing it so that others may hear, too.

Daniel’s blog on MariaShriver.com: http://mariashriver.com/blog/architect/dr-daniel-c-potts/

Daniel’s Wordpress blog: https://danielcpotts.wordpress.com/

A Pocket Guide for the Alzheimer’s Caregiver, by Daniel and wife, Ellen Potts: https://www.amazon.com/Pocket-Guide-Alzheimers-Caregiver/dp/0615497802

Finding Joy in Alzheimer’s: New Hope for Caregivers, by Daniel and Marie Marley: https://www.amazon.com/Finding-Joy-Alzheimers-Hope-Caregivers-ebook/dp/B01896G9K6

Treasure for Alzheimer’s: Reflecting on experiences with the art of Lester E. Potts, Jr., by Daniel and Richard Morgan: https://www.amazon.com/dp/B018LF4NCQ/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1

Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers: Daniel C. Potts, Editor-in-Chief: https://www.amazon.com/dp/B00RDBXL5A/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1

Daniel’s Foundation, Cognitive Dynamics: www.cognitivedynamics.org

About the Author

Daniel C. Potts, MD, FAAN is a neurologist, author, educator and champion of those with Alzheimer’s disease and other dementias and their caregivers. Currently Attending Neurologist at the Tuscaloosa Veterans Affairs Medical Center, Potts is a Fellow of the American Academy of Neurology, and was chosen by the AAN as its 2008 Advocate of the Year for his work promoting the arts and storytelling to enhance quality of life in those with dementia. He has also been designated an Architect of Change by Maria Shriver, and blogs monthly on her website. A Pocket Guide for the Alzheimer's Caregiver, written by Dr. Potts and his wife, Ellen W. Potts, MBA is recommended as a resource by the AAN, the Alzheimer's Association, and Maria Shriver. Ms. Shriver wrote the Foreword of his latest book, Finding Joy in Alzheimer's, which he co-authored with caregiving expert, Marie Marley, PhD. Additionally, Dr. Potts recently collaborated with Dr. Richard Morgan on Treasure for Alzheimer’s: Reflecting on experiences with the art of Lester E. Potts, Jr. 

A clinical faculty member at the University of Alabama College of Community Health Sciences and the University of South Alabama College of Medicine, Dr. Potts also holds appointments in the Honors College and the Alabama Research Institute on Aging. In 2016, he was chosen by the University of Alabama Medical Alumni Association as a recipient of the Martha Myers Role Model Award, honoring physician alumni whose lives epitomize the ideal of service to their communities. Dr. Potts is co-convener and medical advisor of the ClergyAgainstAlzheimer’s Network, and is Editor-in Chief of Seasons of Caring, a multi-faith collection of meditations for dementia caregivers. Potts serves on the boards of the Alabama Humanities Foundation and Alzheimer's of Central Alabama. Inspired by his father’s transformation from saw miller to watercolor artist in the throes of dementia through person-centered care and the expressive arts, Dr. Potts seeks to make these therapies more widely available through his foundation, Cognitive Dynamics. Additionally, he is passionate about promoting self-preservation and dignity for all persons with cognitive impairment. He lives with his wife and two daughters in Tuscaloosa, Alabama.

Meet Susan Suchan: "This Disease Does Not Come With an Instruction Manual"

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 publically 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.

My hope in sharing my experience is that it will not only help shed some insight into a care partner’s questions and concerns, but open an honest dialogue about uncomfortable issues, as well as moving the prism to gain perspective about the life of a person with this diagnosis.

I’d like to bring forth the good and not so good, to keep it real for me and those that follow my experience. This disease does not come with an instruction manual and I feel until there is a cure, all we can do is move forward with the nuances of an ever-changing brain. Sharing my “self,” and how I deal with this, will hopefully help someone else find the purpose in sharing their experience. The best care will come from the knowledge that those of us with this diagnosis, the “experts,” can share.

About the Author:

Susan Suchan is a 58-year-young woman, who was diagnosed with Early Onset Alzheimer’s (EOA) at the age of 48. Approximately 4 years ago, an additional diagnosis of Frontotemporal Degeneration (FTD) and Primary Progressive Aphasia (PPA) were added.

Residing in Tulsa, Oklahoma, Susan has two grown daughters and five grandchildren. She studied nursing and worked in the medical field for 23 years.

She travels nationally, speaking and attending Awareness/Educational events and has advocated as the voice of dementia for two years on the Alzheimer's Association platform, speaking on the lived experience in the state of Oklahoma. She has also spoken on the AFTD'S (The Association for Frontotemporal Degeneration) platform and continues to spearhead the AFTD's ThinkTank. Susan participates in on-line social and educational webinars with Dementia Alliance International, as well as Lori LaBey's Alzheimer's Speaks radio and other on-line programs.

She and her family have been working for over a year on a documentary film with Emmy award winning Kirkpatrick & Kinslow Productions, with a release date of 2017.

Susan Suchan believes that there must be more than inclusion, but collaboration, as well.

Contact Susan:

Twitter: @susans_story

Facebook: facebook.com/susansstory2017

Meet Kathleen Wheeler, author of Brought to Our Senses

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.

Families need to put aside their petty differences to deal with a disease as emotionally, physically, and financially draining as Alzheimer’s. If it takes a village to raise a child, it takes a metropolis to see someone through Alzheimer’s. A strong and united family is key to living through an Alzheimer’s diagnosis and decline, and Brought To Our Senses proves that point.

Response to Brought To Our Senses

The feedback I’ve received about my story has been overwhelmingly positive. Readers struggling with dementia have told me the story has convinced them that they are doing the right things on behalf of their loved ones. Some have commented they had no idea how stressful and complicated the illness can be and the thorny issues that need to be addressed. Others have confessed the story persuaded them to mend broken relationships with siblings. These kinds of responses are truly gratifying.

I hope my novel continues to inspire those touched by dementia and unite families for years to come. I’m never going back to the time “Before Alzheimer’s” and plan to look ahead and work toward a world without Alzheimer’s instead through awareness, compassion, and advocacy. It’s the ultimate goal for all of us who have lost a loved one to this disease.

About the Author:

Kathleen H. Wheeler, author of the debut novel Brought To Our Senses, writes stories that sing because she cannot. A graduate of the University of Illinois, she has wordsmithed as a marketing communications professional for ad agencies and corporations since Nike first coined the slogan “Just Do It.” Wheeler is a music enthusiast and lifelong fan of a British musician known by a one-syllable nickname. Along with her husband and two children, she calls the Land of Lincoln home. Learn more at www.AuthorKathleenHWheeler.com.

About the Book:

Elizabeth Miller discovers that aging parents are a family affair when her divorced mother receives a deadly diagnosis and becomes a volatile patient. Forced to work with siblings at odds through the crisis, she learns when all is lost, family begs to be found.

Brought To Our Senses (Attunement Publishing, released November 1, 2016, paperback $16, ebook $9.99) is available now from all major online retailers, including Amazon, Barnes & Noble, and iBooks. For more information, visit www.BroughtToOurSenses.com.

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. 

I wanted to show how emotional bonds grow even stronger when dealing with a loved one with Lewy Body. I decided to have Nick, the love interest in Competing with the Star, be the one whose grandfather had it. This way he could share his experiences with the main character, Hadley, and it also served to show the kind of person he was spending his weekends at the nursing home instead of at home playing video games and hanging out with friends like most teens his age. 

When I told people that my sequel was going to be more of a romance than the first book, I said, “But even though the first book was set mostly on the beach and in the beach town, this one has them at the nursing home a lot.” Their mouths all dropped open and I heard comments like, “You set a young adult romance in a nursing home? Are you crazy?” I said, “Trust me, it works. It’ll make you root for this couple more.” Then I gave them advanced reader copies and they said, “It works.” “It’s not a superficial teen romance this way.” “It’s not depressing with the setting—it makes you like the characters more.” 

Then the book went out into the world and on the night of its release I thought, “I will never know the reason Dad had to go through this, but maybe someone will be helped by reading about it.” 

Since the book’s release, I’ve heard from people who have a grandparent or parent going through Lewy Body, and the Lewy Body Society sent me a message saying, “Well done,” which made me tear up. I had also written a subplot in another book for preteens and teens called Landry in Like, where Landry’s best friend is scared to go to the nursing home to visit a grandparent with dementia. I’ve received feedback and support on that from parents trying to get their kids to understand the importance of going to see family in nursing homes. I’ve had so many parents say, “Wow, my teen is going through exactly that and she thinks she’s all alone.” 

I’ve learned through writing about Lewy Body Dementia that so many other people are also going through it and feeling like they are the only ones. All I wanted during my time with Dad was to not feel so scared and alone. I didn’t get that, but I hope I can provide just a bit of comfort for someone else who is in those shoes.

Visit LewyBody.org

About the Author

Krysten Lindsay Hager writes about friendship, self-esteem, fitting in, frenemies, crushes, fame, first loves, and values. She is the author of True Colors, Best Friends...Forever?, Next Door to a Star, Landry in Like, and Competing with the Star (The Star Series: Book 2). Her debut novel, True Colors, won the Readers Favorite award for best preteen book. Her new book, Dating the It Guy, will be released in March. Krysten's work has been featured in USA Today, The Flint Journal, The Grand Haven Tribune, The Bellbrook Times and on Living Dayton. 

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Competing with the Star

Landry in Like

Meet Cathie Borrie, author of The Long Hello-Memory, My Mother, and Me

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.” 

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.”

Published in Canada with Simon & Schuster; USA: Skyhorse (Arcade)

Website: http://www.cathieborrie.com

Facebook: https://www.facebook.com/cathie.borrie/

Twitter: @cathieborrie

Meet Ann Campanella, author of Motherhood: Lost and Found

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.

A long-time horsewoman, I was blessed to have a surrogate family of riding students – young girls who, like me, were in love with horses. I spent afternoons at the barn teaching lessons or riding Crimson.

In the beginning of her illness, my mother became angry and upset at her own confusion. I made regular trips across the state to spend time with and try to understand what was happening to her. I often came home to an empty house because my husband traveled frequently. 

Horses and writing were my solace. Seeing my mother’s anguish was heart wrenching. I wrote poems and poured my emotions into my journals. Writing provided a way for me to put some distance between myself and the grief I was feeling. When the pain was too much to bear, I would go to the barn. Some days, I could do no more than lean my head against my horse’s neck. Crimson would stand like a statue absorbing my emotions.

Amazingly, despite this decade of loss, a part of me felt more alive than I’d ever felt before. A sense of compassion for others and appreciation for each moment grew within me as I experienced the ragged edges of life – my mother’s illness and my own miscarriages. And I couldn’t help but be inspired by my mother’s will to live, communicate and love even as her faculties slipped away.

My faith, which had lain dormant for years, became a bigger part of my life. While the losses I experienced were heartbreaking, I also received incredible gifts of grace from my husband, family and friends, moments of intimate connection with my mother and the final miracle of a beautiful daughter.

My writing about Alzheimer’s has been received with more warmth than I could have imagined. After reading my memoir, Former North Carolina Poet Laureate Fred Chappell wrote, “I found this story valuable in an intensely personal way,” and my mentor Tony Abbott, professor Emeritus at Davidson College, said, “Motherhood: Lost and Found has much to teach us all as human beings.” I’m pleased and honored to share my story with others in the hopes of offering them comfort on their journey.

Ann Campanella is the author of the award-winning memoir, Motherhood: Lost and Found. Formerly a magazine and newspaper editor, her writing has been widely published. She blogs about her life and horses at Fields of Grace and is a guest blogger about Alzheimer’s at www.careliving.org, a blog created by Kim Campbell, wife of country music singer Glen Campbell. Twice, Ann has received the Poet Laureate Award from the North Carolina Poetry Society. She lives on a small horse farm in North Carolina with her family and animals.

@authorAnnC (Twitter)

@anncampanella.author (Facebook)

horse_2nd_time_around (Instagram)

www.anncampanella.com (website)

https://fieldsofgrace22.wordpress.com (blog)

https://www.amazon.com/Ann-Campanella/e/B001JOWQ3A (Amazon Author page)

Meet Molly LeGrand, dementia advocate, caregiver and blogger

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 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.

 

As adults, we are always being told to live in the moment. And when we are with our parent or loved one who has Alzheimer’s this sentiment couldn't be truer.  Caregivers are often left to focus on the medical and physical care of their loved ones. But they deserve to be able to spend time with their loved one and to get to know them during this new phase of their lives.

The feedback I’ve received so far is quite positive, and I think there is a growing collective of families and advocates who realize the same thing, that their loved one is so much more than a medical diagnosis. That although painful, this does not mean that their lives with us have become unimportant nor does it mean we won’t have more special moments with them now.

Some of the most extraordinary people I have met were living with Alzheimer’s. I am continuously humbled by their kindness, their joy, and their constant affection. I write about empathy, relaxation, and validation therapy because with understanding; we will find that our loved ones aren’t “behaving” in a particular way because they have Alzheimer’s, but rather they are trying to communicate with us in a new way.

Comprehending a life without memories is difficult. Memories mean so much to us. They provide us with a sense of self and stand as a reminder of the journey we have taken in this life. And the memories we share with the people closest to us become an intricate piece of our identity. Alzheimer’s may take these memories away from us but, the inability to remember does not mean that it has to redefine who we are nor does it diminish the importance of the many moments  we have collected over the years.

I am always hopeful that a cure will be found, but until that joyous day comes, I will continue to write and promote the upside to aging.

Molly LeGrand has cared for older adults living with dementia and Alzheimer’s for over ten years. She is a recent graduate of the Erickson School, UMBC where she received her M.A. in the Management of Aging Services. Her blog Upside to Aging is dedicated to sharing an alternative and more positive side to aging.

Twitter: https://twitter.com/UpsidetoAging


Blog: https://theupsidetoaging.wordpress.com/