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, March 29, 2017

Jack Fussell, Fighting Alzheimer's One Step at a Time



by Jack Fussell

On January 12th, 2013 I left Skidaway Island State Park near Savannah Georgia. I traveled westward to Monterey, California. 2,594 miles were on foot pushing a jogging stroller. 458 miles were in a car. The reason I did this was to raise awareness concerning Alzheimer's disease and raise money for the Alzheimer’s Association.

My dad passed away on June 30th of 2000. I was holding his hand. He died with Alzheimer's disease. Prior to that, prostate cancer had taken a huge toll on both his physical and his mental health. He was a veteran of World War II and witnessed a lot of injury and death. He was a great father. He taught my brother and I how to fish and how to play baseball. He loved making us laugh.

My relationship with Dad had been strained prior to his sickness (my fault). Immediately following his passing, I realized the pettiness that kept me away from time to time. Shortly after his death, I almost lost my life to a bleeding ulcer. While in ICU, I said a prayer, asking God to let me get out of the hospital alive, and promising in return that I would help as many folks as I could until I could no longer breathe. I was in bad shape, both physically and emotionally.

After I recovered, I went to work and changed my circumstances. Since June of 2012, I have raised awareness concerning Alzheimer's disease and money for the Alzheimer's Association. All of this was done in memory of my dad. His name is Leonard Fussell. I blog primarily to express myself and keep a record of things. I hope my dad glances at my blog from time to time. In case he does, "I love you, Dad."

I've been very surprised by the response to my blog. The amount of visitors and the amount of views have been a constant encouragement. The comments have always been positive. People are very forgiving of my sometimes poor use of the English language and grammar. I appreciate their forgiving attitudes.

I've had times when I posted and then later felt discomfort. Sometimes I returned and either deleted the post or changed some of the wording. I still do that, on occasion, but not as often as in the past. I have become very proud of my attempts, and no longer am I ashamed of attempts that resemble failure.

I've had hundreds of people tell me my blog helped them. Some say it was the information the post contained, and others told me they read of my struggles but made note that I continued. They liked the example. Others told me they have witnessed growth on my part and wanted the same for themselves.

I've been blessed with a lot of information. I feel a responsibility to those who shared with me and feel I must do something with that shared knowledge.

I'm still breathing, so my promise to God is still to be kept.

The motivation for my actions and the recording of such, in written form, is to help in our global fight with Alzheimer's disease.

Connect with Jack Fussell



Wednesday, March 22, 2017

Meet Harriet Hodgson author of The Family Caregiver's Guide



By Harriet Hodgson

If you told me I would write a series for family caregivers, I would reply, “Thanks, but I think you’re delusional.” I would say this gently and go on my way. Although I’ve written about my caregiving experiences, I never thought of writing a series. This is odd because I’ve cared for three generations of family members.

My mother had a series of mini strokes and, according to her doctor, they added up to Alzheimer’s. I was her family caregiver for nine years and didn’t realize how exhausted I was until she died. A few years later I became my twin grandchildren’s guardian and caregiver.

On a Friday night in February of 2007 the twin’s mother (my daughter) died from the injuries she received in a car crash. My father-in-law and brother also died. In November the twin’s father died from the injuries he received in another crash. It was unbelievable. The court appointed my husband and me as their guardians, and we did this for seven years.

I hoped life would calm down, but it didn’t. In 2013 my husband’s aorta split and I drove him to the hospital. He was bleeding to death and the ER team took quick action. Unfortunately, successive blood transfusions couldn’t keep pace with the blood loss. My husband had three emergency operations and suffered a spinal cord injury during the last one.

The injury paralyzed his legs. My husband was hospitalized for eight months and dismissed to my care. During this time I visited him three times a day, moved us out of the house we had lived in for 20+ years, built a wheelchair-accessible townhome, and maintained a writing career. Many people have asked me how I did all his and my answer is the same: “I don’t know.”

A week after my husband moved into our townhome I sat down at the computer and started writing The Family Caregiver’s Guide. The purpose of the guide is to make family caregiving easier. Caregivers have little time for reading, so I wrote succinctly and listed Smart Steps at the end of each chapter—self-help tips for readers. As with my other books, I tell a personal story and back-up points with research. Many of the points I make pertain to Alzheimer’s disease. Fifteen five-star reviews of the guide are posted on Amazon. Some of the comments:

“. .. even though the subject matter is a challenging one for any of us, there is a sense of “I can do this” . . .

The book is like a friend that you can return to time and again for assistance and strength.

I loved the Smart Steps at the end of each chapter, a brief review of what has helped her and should be a life line for you.

A great resource for any caregiver. 

The reviews and comments I’ve received are gratifying. Many people have said they wished they had the book before they became caregivers. The Family Caregiver’s Guide came as a surprise and there were more surprises to come. One book led to a four-book series from WriteLife Publishing. My heart, soul, and life are in these books!



Harriet Hodgson, MA


Amazon 




BooksGoSocial 


Author of Alzheimer’s: Finding the Words, a Communication Guide for Those Who Care (John Wiley & Sons). This book is out of print, but I think it is available in electronic form.


Wednesday, March 15, 2017

Meet Gela-Marie Williams, author of Green Vanilla Tea


By Gela-Marie Williams

I remember the evening my youngest son came through 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.

The human experience is intricate - joyous as it is painful and we explored it all. Whether chopping vegetables at the kitchen counter or driving to the supermarket we talked through every evolving chapter, giving the story voice, and their reflections are woven throughout the pages of their book. One they would be able to share with their life partners one day.

A few years later, I was encouraged to submit the manuscript and this creative act of family storytelling went on to win the Australian Finch Memoir Prize. Has this changed things for me? In some ways, not at all. In other ways, it changed absolutely everything. All at the same time. I go about my daily life as I always have: paying bills, folding crinkled laundry, ironing, (how I hate ironing!) However, I now spend more time in my art studio – a long time dream. And when I think back to the origins of this book, I am deeply grateful for what this award made possible. It is profound affirmation of a story that at one time had no words. More so, it opened a doorway for us to set this story free to do its own work in the world. I’ve received profoundly touching letters from readers all over the globe. Perhaps this is how hope grows.


About the Author

Marie Williams grew up in South Africa and lived in Canada before moving to Australia. She has worked as a clinical Social Worker (MSW) in health settings, clinical education, not for profit sectors and private practice. She is also an artist. She paints under her full name Gela-Marie and these days, spends more time in paint-spattered overalls working in her home-based studio.

Links





Wednesday, March 8, 2017

Meet 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.

Through Wendy’s eyes, the reader experiences the emotions I felt over the slow but unstoppable progress of Alzheimer’s. Wendy tries to understand what’s happening to Mrs. V and to help her, including an effort to stop Mrs. V’s real family from taking her away.

Readers of this novel relate to the loss of a loved one, whether from Alzheimer’s or another disease. The story particularly helps young people understand the changes in personality they witness in an Alzheimer’s victim. As I wrote about Mrs. V and Wendy, I also was better able to accept and understand what my mother-in-law and our family endured.

One detail in the plot that came directly from our family’s experience involved the giving away of valuable items to near-strangers. Prior to her diagnosis, my mother-in-law never got rid of anything unless she first asked if anyone in the family needed it. Another detail in the story reflects the hallucinations of friends or loved ones “visiting” my mother-in-law in her home.

Wendy, the main character in my novels, is caught in the middle of a drama created by Alzheimer’s disease that she is as poorly equipped to deal with as I was. I hope through 10 Steps to Girlfriend Status and its sequel, 6 Dates to Disaster, readers young and old will recognize themselves or their loved ones in my fictional characters and find comfort or guidance for the challenges of Alzheimer’s.

Bio and Links

Unlike many authors, Cynthia didn’t grow up thinking she had the ability to write fiction. She took a circuitous route to her first published novel as a teacher, newspaper artist, marketing director, and interior decorator. She first wrote advertising, catalog, and mail copy, as well as a newsletter about using salvaged materials in decorating.

Now she writes novels for preteens and teens because she wants them to know how wonderful, powerful, and valuable God made them. Her contemporary and historical fiction has twisty plots with elements of mystery and romance—because life is complicated. Ask any teen!

Cynthia’s Bird Face series (so far) includes 8 Notes to a Nobody, 10 Steps to Girlfriend Status, and 6 Dates to Disaster. Before her beloved mother-in-law had a chance to see any of the books published, she died as a result of Alzheimer’s.

Cynthia has a passion for rescuing dogs from animal shelters and encourages others to save a life by fostering or adopting a shelter pet. She enjoys growing herbs and studying the complex history of the friendly southern U.S. from Georgia to Texas, where she resides with her husband and several canines.

Buy link for 10 Steps to Girlfriend Status: http://amzn.to/2fnwGTe





Twitter: @CynthiaTToney

Pinterest: Cynthia T. Toney, YA Author

Instagram: @CynthiaTToney

Wednesday, March 1, 2017

Meet Marie Marley, author of Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy


cbet-high-res-coverBy Marie Marley

I took care of my beloved Romanian 30-year life partner when he developed Alzheimer’s. The disease began very slowly, and for the longest time I just couldn’t understand the changes he’d been displaying. He’d become short-tempered, often confused and sometimes unusually forgetful.

Then one night he was found driving on the wrong side of the road. Realizing what he’d done, he pulled over and stopped. A wonderful lady pulled up behind him and asked if he needed help. Seeing his bewilderment, she gave him a ride home, and he told her to call me. That’s when I began to wonder if he might be getting Alzheimer’s.

I took care of him for four years. When he could no longer live safely at home, I was regretfully forced to place him in a nursing home. It was an excellent facility dedicated exclusively to the care of people with Alzheimer’s and other dementias.

He lived there for nearly three years before passing away. During that time, I often couldn’t reach him. Then one day I was in Walgreen’s and saw an aisle with stuffed animals. With great hesitation, I decided to buy him one. It was a tiny chick that peeped when you pushed a button on its chest. I was afraid my brilliant former lawyer and subsequent professor of French would be insulted that I’d taken him a child’s toy.

Quite to the contrary, he loved it, and immediately began caressing and kissing it. He named it “The Little Yellow One.” Then we began playing little games with it. We laughed like a mother playing with her small child. After that I took him more stuffed animals. He loved each more than the one before. I realized I’d made him magnificently happy. What’s more, I’d discovered a way to interact with him that was meaningful to us both.

After he passed away, I published a memoir about our life together, focusing on the time when he had Alzheimer’s. “Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy” is quite popular with readers. Those who are caregivers say it helped them very much, and those who are former caregivers say they wished they’d had it when they were caregivers. The memoir has been a finalist for five literary awards.

Since then I have published more than 450 articles on the Huffington Post, the Alzheimer’s Reading Room and Maria Shriver’s website. All deal with Alzheimer’s caregiving.


Then in 2011, I met Daniel C. Potts, MD, FAAN. We discovered we shared a mutual interest in helping Alzheimer’s caregivers, and decided to write a book exclusively for them. “Finding Joy in Alzheimer’s: New Hope for Caregivers” has also received positive reviews from readers.

From my sometimes difficult experience with Ed, I unwittingly developed a new career—that of helping caregivers of people who live with Alzheimer’s or other dementias. My new career is deeply meaningful to me, and I plan to continue it for many years into the future.

About the author

Marie Marley is the author of ‘Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy,’ which was a finalist for five literary awards: The Eric Hoffer First Horizon Awards, The International Writer’s and Editor’s Awards, The Santa Fe Writer’s Project Literary Awards, The Reader’s Choice Awards, and The Indie Excellence Awards. She is the co-author (with Daniel C. Potts, MD, FAAN) of ‘Finding Joy in Alzheimer’s: New Hope for Caregivers.’ She has also published more than 450 articles about Alzheimer’s caregiving on the Huffington Post, the Alzheimer’s Reading Room, and Maria Shriver’s website. She lives in Kansas City with her two adorable little Shih Tzus, Joey and Christina.

Facebook - https://www.facebook.com/mariemarleys

LinkedIn - https://www.linkedin.com/in/mariemarley/

Huffington Post - http://www.huffingtonpost.com/author/marie-marley

Maria Shriver - http://mariashriver.com/blog/architect/marie-marley/

Books’ Website - http://www.comebackearlytoday.com/

Wednesday, February 22, 2017

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.

Wednesday, February 15, 2017

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

thanksgiving-2014

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