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, April 26, 2017

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?

That stunning photo haunted me. On one level, I was so proud of her, the way I had been as a child. Her beauty and kind nature attracted people to her like a magnet. But on another, deeper level, I was troubled by the fact that the promise of a wonderful future had not been fulfilled. On a purely clinical level, I wondered what had propelled her from point A to point B.

But it was too late to ask. My mother’s mind had been hijacked by Alzheimer’s. She had reached the point where the simplest tasks were beyond her. Making sure she was taking her medication and eating something had been my upmost worries. What I had not realized was that something very precious was being lost as the disease ravaged her brain. Whatever her hopes and dreams were back in 1949, they were completely lost now. 

At the same time, a scene from my childhood began flashing across my mind, a scene I hadn’t thought of in many years. But as I relived standing by my siblings, watching through the window while our mother smashed our dishes to the floor, the shock and anxiety I remembered feeling all those years ago was replaced by curiosity. What prompted that isolated fit of rage? 

After my mom’s move, I felt compelled to understand what her life had been like from her viewpoint. I turned detective, combing every resource to tie together what I knew with the facts I could unearth to create a timeline going back to her first husband. 

What I had when it was finished was not a book about Alzheimer’s or how to navigate it, but more a tribute to a very strong woman. What I learned about her while writing it made me love her even more, despite our rocky past. The unexpected upside to having Alzheimer’s was the loss of all my mom’s painful memories. She has nothing but love in her heart now, and I’m so grateful that she will leave this life in peace.


The most important lesson I learned from writing Finding Ruth was this: if we don’t ask while we have the opportunity, we may never know our loved ones’ past. 

Ask, while you still have the chance.

https://twitter.com/AuthorCynthiaH

http://cynthiahamiltonbooks.com

Cynthia Hamilton Books on Facebook

Wednesday, April 19, 2017

Meet Elaine Pereira, author of "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.

I believe I Will Never Forget resonates with readers, caregivers and families in part because I admit my denial, ignorance and transparency reveal my unwitting mistakes. I saw my mom as the glass half-full, with intermittent episodes of puzzling remarks and goofy behaviors, when in fact she was more the glass half-empty, with occasional bright moments.

Caring for someone with dementia is a unique undertaking compared with other conditions. They all demand patience and special training, but none requires the exhaustive and creative redirection that Alzheimer’s does.

For someone with dementia, there is no expectation that the person will improve. Alzheimer’s is a progressive, fatal neurological disease with no cure.

There is no expectation of consistency. Awareness in people with dementia fluctuates from one moment to the next. Bright rays of lucidity are peppered amidst increasingly longer periods of distorted judgement, outbursts, memory loss and more.

I offer Community and Professionally Based Presentations. At one seminar a few years ago, an older gentleman, tears welling in his eyes, expressed guilt for having just moved his wife into a memory care facility. He was questioning his decision and felt like “a failure” for needing to relinquish to others what he perceived as his “job”.

My reply: “Whatever decisions you make out of genuine love in behalf of someone else is the right decision.”


About the Author:

Today Elaine works extensively to advance Alzheimer’s awareness through her Award Winning/Best Selling memoir I Will Never Forget, community and professional presentations and pertinent articles.

A native of Kalamazoo, Elaine Pereira and her husband Joseph live in South Eastern Michigan with their two big dogs and two new cats. Together they have five adult children and five young, adorable grandchildren.





Wednesday, April 12, 2017

Meet Pippa Kelly author of Invisible Ink


By Pippa Kelly

Before signing off the final proofs of my debut novel I read the manuscript for the first time in over a year and realised that it was not just laced, but saturated, with guilt.

Invisible Ink tells the story of Max Rivers, a young London lawyer who seems to have it all: a beautiful girlfriend, a burgeoning career, an enviable address – but he harbours a secret. When he and his younger brother Peter were schoolboys, Peter went missing, for which Max blames himself. So it’s fair to say that the novel is about guilt: Max’s guilt, which he tries (and ultimately fails) to suppress.

However, the guilt that I recognised in my writing wasn’t Max’s, it was mine.

I wrote Invisible Ink during the most difficult years of my life. I worked on successive drafts while both my elderly parents were very ill (mum had dementia, dad suffered a series of strokes) and when the pair of them were starting to take up more and more of my time and energy. Without realising it, I – like hundreds of thousands of others – became their carer, albeit at a distance.

This provoked in me a maelstrom of emotions, from pain and grief to resentment (at being taken away from my own life and family) and confusion – all overlain with an unyielding patina of guilt.

Several pivotal scenes unfold as an elderly parent’s health fails. I experienced many of them, and so too does Max Rivers, albeit in heightened, fictional form. Max’s mum is developing dementia. Early in the novel, Max sits and cradles her in his lap as they wait for an ambulance. He has unwittingly (and in his case unwillingly) become his mum’s carer. As I did.

One of my hardest moments was when, for a brief moment, I saw that my mum understood what was happening to her. I was visiting her two weeks after she’d moved into her nursing home. As we sat in its garden she told me she’d cried herself to sleep the night before.

“Why?” I asked, riven with guilt, sure that she’d berate me for making her move out of her home.

She didn’t. She looked me straight in the eye (just as Max’s mum does when he leaves her at Holly Lodge) and said simply, “Because I can’t remember my life”. It was the saddest thing I’ve ever heard.

I’m often asked why the protagonist of Invisible Ink is male. It’s a good question and one that I frequently asked myself as I battled through the difficult first draft. I think, subconsciously, I was distancing myself from reality. My emotions were almost too raw to articulate; by making Max a man I created a buffer between my experiences and the words I was writing.

Invisible Ink is not a novel about dementia. It’s the story of Max Rivers and his missing little brother. As such, it’s a tale of guilt and love and loss. A description, now I think of it, that could equally apply to the universal story of dementia. 



Invisible Ink, published by Austin Macauley, is available in paperback (£8.99) and Kindle (£3.50) from Amazon.

Pippa Kelly is a London-based writer on dementia who blogs for the Huffington Post and mariashriver.com. Her articles have appeared in numerous UK national newspapers and magazines and she has her own award-winning blog at pippakelly.co.uk.

Follow her on Twitter @piponthecommons and Facebook.

Wednesday, April 5, 2017

Meet Rachael Wonderlin, author of "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.

There are not many resources out there for families who are considering long-term dementia care communities for their loved ones. While there is a lot of information about caring for someone at home, there really isn’t much for those trying to decide on community care. That is why I focused so much on care communities in my book. I really wanted a way to teach caregivers that they didn’t need to feel so guilty about moving a loved one into a care community. I wanted to create a book where caregivers could get the answers to their tough questions.

I have had a lot of caregivers reach out to me about the book and about my blog. Overwhelmingly, my readers have told me that they feel less guilty about making tough decisions on their loved ones’ behalf. I love that I can help them. Dementia caregiving is hard enough, and it is a lot more challenging when you’re internalizing a lot of guilt.

When you know one person with dementia, you know one person with dementia. I have met hundreds, if not thousands, of people with dementia. I tell a lot of true stories in my book, and many of these stories are directly from my experience with my residents in care communities. I think this can really help caregivers relate. A number of readers have contacted me to say, “Wow, this one part really reminded me of my mom,” or, “There were a few chapters that described what I am going through perfectly.” That is exactly the type of reader experience I was going for.

About the author

Rachael Wonderlin has a Master's in Gerontology and owns Dementia By Day, LLC. Her book, When Someone You Know is Living in a Dementia Care Community, was published in November 2016 with Johns Hopkins University Press. Rachael's blog can be found at www.dementia-by-day.com. She is a consultant, speaker, and community designer.

Connect with Rachael:





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"

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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

Wednesday, February 8, 2017

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.


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.

Wednesday, February 1, 2017

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.




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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Wednesday, January 25, 2017

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)



Twitter: @cathieborrie