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, October 16, 2019

Meet Senia Owensby, author of "Finishing Well: Finding the Joy in Dementia"


Reposted with permission from AlzAuthors.com



By Senia Owensby

Dementia was not even on our radar. When my sister and I found ourselves devoting extra time and energy into caring for Mama and Daddy, we simply assumed that their diminishing abilities were a natural part of the aging process. Symptoms were easy to excuse and explain away. Resistance to taking medicine was perceived as non-compliance, not forgetfulness. Failure to tell us what the doctor had said was perceived as unwillingness, not forgetfulness. Reluctance to eat was perceived as a lack of appetite, not forgetfulness.

Dementia didn’t begin with a bang or a diagnosis from a doctor. It didn’t announce itself and take over. At first it seemed that something was simply odd or out of place, but as time went on, we began to put it all together: medicine not taken, meals neither prepared nor eaten, no letters written or crossword puzzles started.

Bits and pieces of activities from everyday routine gradually disappeared. Dementia had snuck in quietly and stolen away parts of Mama’s life – her memories and abilities.

When my Dad passed away in 2005, we took over the full responsibility of caring for Mama. By then, we had a better idea of the gravity of her situation.

Since we had not traveled this path before, we didn’t have any roadmaps to guide us. Resources, other than health journals full of medical jargon did not offer much help.

We made a decision that no matter how this all played out, we would make every effort to help Mama experience as much quality of life as possible. That resolution launched us into a decade-long journey to help Mama ‘Finish well’ while searching for joy in dementia.

We stayed busy. We sang, went to church, ate at restaurants, attended concerts, watched her favorite musicals, played two-square with my exercise ball, took walks, watched yellow finches flit and fight at birds feeders, enjoyed water activities, went for long car rides – anything that she felt up to doing and enjoyed.

Mama’s decline into dementia was a long journey filled with both challenges and joys. Over the next several years, we found ourselves sharing ‘Mama Stories’ with others who found themselves in the same situation.

Over time, we realized that others walking along the same path could benefit from our experiences. We collected a number of stories and distilled them into short, easy-to-read chapters on our new lifestyle with Mama - along with our philosophy of joy. The purpose of Finishing Well: Finding the Joy in Dementiais to provide hope for fellow caregivers. Amazon was a perfect method for publishing, and we were delighted at the response we received.

In addition to the book, I launched a blog: finishingwellinlife.comin my never-ending quest to help caregivers as well as share ideas on how to prevent dementia.

About the Author

Senia Owensby has always loved to write. Her passion for writing has produced a broad variety of literature, including short stories, several children’s books and an assortment of articles for numerous publications.

Senia is a Certified Life Coach who lives in a small cottage in North Carolina. She’s married to the love of her life, and is also a mother and grandmother. Since retiring, she spends her time both writing and working in her garden.



Wednesday, October 2, 2019

Meet Susan Straley, author of “Alzheimer’s Trippin’ With George”

Reposted with permission from AlzAuthors.com


By Susan Straley

 My finger hovers above the mouse button. The curser pauses over the orange “publish” button on the screen of my laptop. I am sitting at our motel room desk in northern Idaho. We are a long way from our home in Florida.

It is after midnight. George has been sleeping for hours while I have uploaded the day’s pictures and written about the amazing and… interesting experiences of the day.

I sit in the late night silence, hesitant to click, my brain flipping over possible consequences. A single tear traveling down my right cheek has now stopped mid-stream as if it too is waiting for a decision.

Earlier that cold, rainy day we had hiked up Pulaski Trail outside of Wallace, Idaho. Parts of the climbing mountain trail were narrow, bordered by steep cliffs on one side and precipitous declines on the other side. It was a great walk with kiosks along the route that told the story of a great fire and a group of fire-fighters that survived. We probably walked over 3 miles, maybe over 4. This was something to celebrate because an early symptom of George’s dementia was loss of balance and walking had become a challenge. We had been doing exercises to keep George mobile. The work was paying off. We were about 1⁄4 mile from the end of our trek and I stopped and turned to George behind me to give him a hug and a cheer. He was shivering from the cold.

Then I felt an unexpected warmth. I stepped away and looked down. There was a dark spot growing on the crotch of George’s pants. He also looked down, but did not seem to comprehend what was happening and what to do about it. I guided him to finish his urination into the bushes.

So here I am, sitting at the desk in the dim motel room. I had been encouraged by the growing audience of readers of the blog to tell all and be open and honest about our experiences. “It will help so many,” they told me.

Already I was hearing from other caregivers that they excitedly checked for my posts every day. The posts helped them feel they were not alone in their emotions and experiences.

So I had written openly and honestly about this day. But now I sat in doubt. What about our friends? What about the children? What if George has a cognitive moment or … what if he recovers and the diagnosis was wrong? This man, this respected Mechanical Engineer and Computer Programmer is losing balance, language, and control of his bladder and bowels.

The tear that was resting on my cheek is now being pushed down further by more tears behind it. It dangles from my jaw and then falls onto my wrist. My finger goes down and I hear the click… Published.


SUSAN STRALEY BIO

The first book in the Trippin’ series, Alzheimer’s Trippin’ with George – Diagnosis to Discovery in 10,000 Miles, is the journal of George and Susan’s “last hurrah” trip after learning that George had progressive dementia. The book is getting great reviews on Amazon and Goodreads. A common comment, “I love it! I couldn’t put it down!” Even those who have never cared for someone with dementia have found the book informative, fun, and gripping.



The second book is a continuation of their story after they return from their road trip. The story demonstrates that life can still hold great joy for both the caregiver and the one living with dementia. The Journey Continues – Alzheimer’s Tripping with George, Over The Bumps with Friends, Family and Community Support was just released in spring of 2019. The e-book version will be launched in the fall.



Susan Straley was born with an urge to wander. “My parents were often searching for me. At three years old they found me several blocks away playing in a mud puddle,” said Straley.


In 2008 Susan and George semi-retired and moved all their belongings into storage except what they needed for a long bicycle trip on their recumbent tricycles (reclining seats on three wheels). They pedaled around Wisconsin. The journey took 40 days and was the start of Susan’s writing career as she uploaded pictures and stories to an on-line journal.

The Straleys then moved to Inverness, Florida, a small town is located along the 46 mile Withlacoochee bicycle trail.

Susan and George have since gone on several other tricycle trips, the longest was from Northern Illinois to their home in Central Florida.

Susan still enjoys riding recumbent tricycle with friends.

Susan invites you to join in the fun as she keeps trippin’ at SusanStraley.com. Sign up to receive a chapter from The Journey Continues FREE and to be notified when Susan launches a book or starts another travel journal.

You can also join in the fun on Facebook at Susan Straley Writes.






Wednesday, September 25, 2019

Meet Zoe Fishman, author of "Inheriting Edith"


Reposted with permission from AlzAuthors.com



By Zoe Fishman

Our parents. They raise us; they tolerate us; and if we’re lucky, they love us even when we’re terrible.

And then one day, you wake up and look in the mirror. You are not bright eyed and bushy tailed, you have eye bags and patchy skin. Your two-year-old has been up since five am, watching cartoons at your parents’ house, the house you grew up in, the house that you are visiting now as an almost forty-year-old adult. You pad into the kitchen, pour yourself some coffee and sit. You look at your parents, your mother on the couch next to your son, your father at the kitchen table next to you with his basket of medicine and you realize that if you are oldish, then they are old. And then you realize that you are all just going to keep getting older, God willing, and that the tables will turn and you will take care of them; just as they took care of you. You drink more coffee and worry about what exactly that will entail.

That’s what happened to me, back in 2014. I drank my coffee and thought about how I would essentially be inheriting my parents and then as the caffeine began to wake my brain I thought about how nice a windfall inheritance would be, but then remembered that nothing comes without any strings attached; there is always a catch. And thus, Inheriting Edith was born.

Initially, Edith was not going to have Alzheimer’s. But then I spoke to my mom on that same trip home, sharing my idea, and she asked me what exactly was at stake for Edith? My grandmother, my father’s mom, had had Alzheimer’s, and upon further thought I realized that Edith, not having a choice about the loss of her memories, and Maggie, her reluctant caretaker, willingly repressing hers, created an interesting dynamic. So, thank you to my Mom.

One of my biggest fears in writing this book was that I would unintentionally undermine or misrepresent Alzheimer’s. I asked my father about how hard it must have been for him to witness his mother’s decline, and he told me something she said at one point in the early stages of her disease. She said to him, “Ethan, I don’t know whether I’m coming or going.” The naked vulnerability of such a statement struck me deeply and it, along with much research, became my guide in realizing Edith’s journey.

It has been a source of great joy for me that so many of my readers have commented about the accuracy of my depiction of not only Edith’s Alzheimer’s, but my depiction of her relationship with Maggie. It’s a delicate dance to say the least, and to have it resonate with others in this position, to know that it may have made them feel less alone in their struggles, has been a true gift.

Bio:




Zoe Fishman is the bestselling author of the upcoming Invisible As Air, which will be available in September 2019, as well as Inheriting Edith, Driving Lessons, Saving Ruth and Balancing Acts. Her books have been translated into several languages and she’s the recipient of myriad awards, including an IndieNext Pick.

Zoe worked in the New York publishing industry for thirteen years. She was recently the Visiting Writer at SCAD Atlanta and currently teaches at Emory Continuing Education and The Decatur Writers Studio, at which she is also the Executive Director. She lives in Decatur with her family.

You can visit her website at www.zoefishman.net, like her on Facebook/ Zoe Fishmanand/or follow her on Twitter at @ZoeFishman76.



Monday, September 23, 2019

North East Ohio Alzheimer's Association included AlzAuthors in Akron and Medina Walks to End Alzheimer's


For the past two weekends, I've been honored to display a sampling of books, all written by people like me, perhaps like you too, who have had personal experiences with Alzheimer's and dementia. 

AlzAuthors, a group I helped cofound, was invited to be an exhibitor at the Walks to End Alzheimer's in Akron and Medina.

People were astounded to see this wealth of books, written from personal experience. Now they know they are not alone in their journey.

Read the entire post on AlzAuthors

Wednesday, September 18, 2019

I Never Expected This

I never expected to become the caregiver for my parents, I never expected to write a book, and I certainly never expected to have that book made into an audiobook.

But, in the eight years since my retirement from teaching 3rd graders, I have written not only one book, but now four, all based on family. (The most recent being a children's series written through the voice of my grandchildren's pets). My first book, Alzheimer's Daughter, remains a top seller on Amazon in the category of eldercare. 

Also unexpectedly, I have ventured into the world of audiobooks. I never even considered that my books could become anything but written words on paper or a Kindle device.

Spurred by my colleagues at AlzAuthors, I began to explore Amazon Audible. I uploaded a sample of Alzheimer's Daughter through their author platform, ACX. Audio auditions began to arrive. I received 20 auditions in all, from highly capable voice actors. 

Karen Merritt's audition stood out, honestly because she told me she'd read my entire book before she auditioned and felt deeply connected to my story.

We spoke by phone so she could understand my parents' personalities and my own, and she began her magical work.

Within a period of about six weeks, we released the Audible version of Alzheimer's Daughter.

But most unexpectedly, I had the opportunity to meet Karen Merritt for lunch recently. She lives near Pittsburg and I near Cleveland. So, we drove halfway to a diner that had the same aroma of frying bacon and burgers as the small-town Farmer's Restaurant where my parents ate many a meal in my book. 

Oh, the joy and connection radiating from our meeting; Karen is a part of my story now as she narrates the voices of Ed, Ibby, my sister, and me.

A curious gentleman at a nearby table couldn't help but recognize our deep emotion and he offered to take this picture. 

I'm forever thankful for Karen blessing my life with the tenderness and love she poured into this project.




Tuesday, September 17, 2019

Do you enjoy poetry? This week AlzAuthors welcomes a poetry book by AlzAuthors manager, Ann Campanella, What Flies Away.
Ann writes:

"What Flies Away tells the story in poetry of my mother’s journey through this disease and the path of grief our family traveled. It begins with a poem called “What she doesn’t know.” As I take her for “a ride,” we are chatting about birds/and insects and other things that fly away, until the hospital rises like a castle before us...Everything in me fought against it, but I had to leave my mother, in hopes that she would receive the help she needed.”


Read the entire post here.

Tuesday, September 3, 2019

Meet Rev. Dr. Cynthia Huling Hummel, author of "Unmasking Alzheimer's: The Memories Behind the Masks"


Reposted with permission from AlzAuthors.com



By Rev. Dr. Cynthia Huling Hummel

In the summer of 2017, I participated in a special program called “Art Reflects” for people with Alzheimer’s disease and care partners. The program was hosted at the Community Arts of Elmira (Elmira, NY.) One of our classes was about mask making and I was especially excited and intrigued to create a mask that would reflect what it meant for me to live with Alzheimer’s disease. But the more I thought about it, the more I realized I couldn’t make just one mask—because there were so many dimensions to living with the disease. Before I knew it, I was up to 30 masks.

At the urging of friends, I photographed my masks and wrote about each one to create the book UnMasking Alzheimer’s: The Memories Behind the Masks.

To unmask is to reveal, to uncover or to bring to light.
  • It is my hope that the photos of my masks, along with the stories that I wrote, will “unmask Alzheimer’s” and bring to light one person’s perspectives of living with AD.
  • It is my hope that my book will create an opportunities for those living with the disease, those caring for them, friends, relatives and the medical community to dialogue about how Alzheimer’s feels, how it changes us and challenges all of us.
  • I also hope that this book will nudge people who have memory concerns to make an appointment to see their primary health care provider to talk about what is going on and together come up with a plan on what to do next.
  • I hope that those who are living with the disease will feel less stigmatized.
  • I hope that those of us who are living with the disease will be less feared and more included in the decisions that affect us and our daily lives.

Early diagnosis is the key to living well with dementia. Finding a cure to Alzheimer’s is my hope and my prayer.

I have received wonderful feedback on my book. International Dementia Advocate, Brian LeBlanc wrote: “BRILLANT!!! Cynthia has taken her emotions, struggles, her loves, her truths, her passions and puts them on display for the world to see, all in the form of masks. What better way to show what goes in inside the brain of someone living with Alzheimer’s! Bravo, Cynthia Bravo!


About Me: 

The Rev. Dr. Cynthia Huling Hummel, is a fierce Alzheimer’s  advocate and a voice for those living with the disease. Diagnosed with amnestic Mild Cognitive Impairment in 2011 and with AD in 2016. 
  • Cynthia serves as a National Early-Stage Advisor for the Alzheimer’s Association and speaks locally, and nationally about living with Alzheimer’s disease.
  • In 2017, she was appointed by the Secretary of Health and Human Services to the National Council on Alzheimer’s Research, Care and Services.
  • She has participated in two National Research Summits.
  • As a member of the Faith United Against Alzheimer’s Coalition, a national network of clergy, laity, and faith organizations, she has written several chapters for an upcoming book on serving the spiritual and worship needs of persons with dementia.
  • Cynthia is passionate about Alzheimer’s research and has been a participant in the Alzheimer’s Disease Neuro-Imaging Initiative study since 2010.
  • Cynthia loves to sing in the band, “Country Magic” and was inducted into the NY State Country Music Hall of Honor in 2016.
  • She enrolled at Elmira College in 2011 and is taking her 37thclass.
  • Cynthia enjoys kayaking, swimming and golf and loves to travel.
  • Cynthia substitute preaches in and around the Finger Lakes. Most of all, she loves being a grandma to Cate and Henry.

Contact Rev. Dr. Cynthia Huling Hummel at revdrchh@gmail.com

Follow Dr. Hummel on Facebookand LinkedIn.