Alzheimer's Daughter

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.

Monday, June 22, 2015

This Book Can Be Judged By Its Cover

As a followup to my previous post about books on Alzheimer's disease, I'd like to tell you about Blue Hydrangeas, a book I came across shortly after it was published two years ago. 

I gravitate toward Alzheimer's books written by caregivers about personal experiences. Blue Hydrangeas is fiction, written by a nurse, but the stunning cover drew me in. 

In this case, I believe this book can be judged by its cover because Marianne Sciucco's tender love story about an elderly couple who own a New England bed and breakfast captivated me from page one. 

Marianne Sciucco
Blue Hydrangeas, an Alzheimer’s love story
Blurb: What if the person who knew you best and loved you most forgot your face and couldn’t remember your name?



A short excerpt:
Jack watched while Dr. Fallon grimly examined Sara, took samples of her blood, and performed a few mental tests. When the examination was over, he brought them into his office and tried to be optimistic, but warned them the situation could be grave. Following his recommendations, they consulted a neurologist and a psychiatrist. She went for a MRI of her brain.
       Several stressful weeks passed before all of the test results and consultation reports were in. They returned to Dr. Fallon’s office and he explained the diagnosis. He was blunt, left no room for misunderstanding, and told them what to expect.
        Jack refused to believe it. “I want a second opinion,” he said. “I want her to see the best specialists we can get. We’ll go to Boston, to New York. Nobody in our family has ever had Alzheimer’s disease. Find something else. You have to do more tests.”
     Sara sat by his side and clung to his hand. An air of despondency descended upon her. Silent, she studied the doctor’s face.
          “I wish I could tell you otherwise, Jack, but there is no single test to diagnose Alzheimer’s,” Dr. Fallon explained. “We’ve done all the tests available to rule out other conditions that might explain Sara’s symptoms. Everything indicates probable Alzheimer’s, and there’s nothing more to do.”
         “You say it’s ‘probable,’” Jack argued. “See? You’re not sure. It could be something else.”
           Dr. Fallon leaned toward Jack and looked deep into his eyes. “Jack, right now all I can say is that it is probable, because only an autopsy can provide a definitive diagnosis.”
            Jack had no words to respond to that suggestion.

Marianne has become a great friend and advocate for others who write about Alzheimer's. Today, she agreed to answer some questions for my readers. 


1.   What is the most important thing you have learned about yourself through writing?

Writing has taught me the limitless depths of my imagination, my desire to perfect my craft, my dedication to completing a project no one requires of me, and my unwavering belief that I have something wonderful to offer the world.

2.     Do you have a special place to write?

I have a beautiful office in my home with a gorgeous mission style desk with lots of desktop, drawers, shelves, and cabinets. It’s overrun with papers to be filed, books to read, little slips of paper with notes on them, and lots of paraphernalia unrelated to writing. I’ve rigged everything to be ergonomically correct, to help me maintain the best posture to avoid triggering my repetitive strain injuries, but I often find myself writing on my lap top in the living room.

3.     Do you use any special tools to write?

I have lots of tools. Of course, I use a computer, either a PC or a lap top, but sometimes use my iPhone to jot down ideas on the run. I have a Kindle too, to research on the internet or read books about writing, publishing, marketing and promotion, etc. Right now I’m using Grammarly to spellcheck and analyze my work for grammar, punctuation and style errors. It’s a good tool, although a little pricey. I also use Bobbie Christmas’ Find and Refine Method to edit my work. This can be found in her book “Write in Style.” And I use Dragon Dictation because sometimes my hands aren’t up to the task of writing, and it’s a pretty accurate tool, well worth the investment.

4.     Can you tell us what you’re working on now?

My current WIP is Swim Season, the story of high school swim champion Aerin Keane, who is determined to leave her troubles behind as she starts twelfth grade in her third high school. Senior year is supposed to be fun, right? Friends. Parties. Boys. Ready to give up her dreams of a college swimming scholarship and a shot at the Olympics, Aerin decides she doesn't want to win anymore, she wants to swim for fun, it's her "therapy." But when her desire to be just one of the girls on the team collides with her desire to be the best this school has ever seen, will Aerin sacrifice her new friendships to challenge a long-standing school record attached to a $50,000 scholarship? I hope to publish later this year. Here’s a preview.

5.     Where did you get the idea for your book?

Like so many authors, I wear several hats, one of which is 'Swim Mom.' I've shuttled my daughter to swim meets and swim practice for years, and now follow her across state lines during her college swimming career. All those hours sitting on cold, metal bleachers waiting to watch her swim for a minute or two gave me more than a sore you-know-what: It inspired me to write a book about it. My goal is to write a story about the whole high school swimming experience, to show others who may not be as familiar with the sport how much fun it is and how hard these kids work. I started it four years ago and will soon have a completed manuscript. The plan is to publish in 2015.

6.    Do you have a favorite character from your book or series? Why that one?

I love my heroine Aerin. She’s a character I developed slowly, because I didn’t know much about her when I started writing her story. She’s an Olympic hopeful, but has been through a few life-changing experiences that have left her confused, angry, and unsure of herself. She grows a lot in this story. She’s fiercely loyal to her mother, a veteran of the wars in Iraq and Afghanistan, whom she sees as both a victim and a patriot, and is determined to support her. She’s furious with her father and resents her stepmother and stepsisters, but comes to peace with them.  Always the odd girl in school, set apart by her swimming achievements, she longed to be just one of the girls, and finally has friends and fun in her new high school. But in the end, she realizes her destiny is to be great, and she is willing to sacrifice her new friends to do so. She is a strong young woman and a great leader. I admire her dedication to her sport and to herself.


Marianne Scuicco's links:
An Interview with Author Marianne Sciucco
Facebook
Goodreads
Google+
Linked In
Pinterest
Twitter
Website
Buy links:
Amazon
Amazon UK
Audible
Barnes and Noble
iBooks
Kobo
Nook
Scribd


Bio: Marianne Sciucco is not a nurse who writes but a writer who happens to be a nurse. A lover of words and books, she dreamed of becoming an author when she grew up, but became a nurse to avoid poverty. She later brought her two passions together and writes about the intricate lives of people struggling with health and family issues. Her debut novel, Blue Hydrangeas, an Alzheimer’s love story, is a Kindle bestseller, IndieReader Approved, a BookWorks featured book, winner of IndieReCon’s Best Indie Novel Award, 2014, and a Library Journal Self-e Selection. A native Bostonian, she lives in New York’s Hudson Valley, and when not writing works as a campus nurse at SUNY Orange.

Many thanks for your time today, Marianne. I'll be 1st in line to buy a copy of Swim Season!







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Saturday, June 20, 2015

Father's Day


Months after Mom died, I attended a Father's Day picnic at the memory care unit where dad now lived alone. 

 The staff grilled burgers, hotdogs and produced an array of every food anyone would encounter at a down-home family reunion. Residents smiled and laughed at the happy hubbub. Staff members lovingly served each resident. 

 As entertainment, a country crooner belted out his one-man-band 1950s hits like, "Won't You Come Home, Bill Baily," and "Love Letters in the Sand."

 Staff members coaxed residents who were mobile and could stand to get up and dance. Dad danced with me. I'll never forget that moment, the pure joy springing from him in this otherwise bleak situation. Dad held onto his joy and graciousness until the very end of life about 9 months later. 

 I coutinue to learn important lessons from him through reflection on his life.
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Wednesday, June 17, 2015


Caregiver decisions are agonizing. Mom died five years ago, and Dad four, but I still second guess myself. Did I make the best decisions for them?

 In my case, both of my parents were diagnosed with Alzheimer's disease on the same day and declined hand in hand. Mom suffered broken bones and food poisoning while still living in their own home and Dad still believed he was a capable driver.

 The picture above of them holding hands in front of their climbing red rose bush, with their clematis vine to the right side, reminds me of the pride they had in their yard and their small  brick ranch home. 

 In talking with other caregivers, lingering guilt is a common thread. A loving adult child never wants to shoulder the responsibility of slowly stripping away the independence of parents who gave them everything. 

 Even as we try to convince ourselves we did the best we could to make decisions to keep them safe, guilt lingers. 

 The only way for me to counter that guilt is to honor them with pleasant memories.
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Monday, June 15, 2015

Somebody Stole My Iron by Vicki Tapia

I love technology. Technology helped me write and publish Alzheimer's Daughter. Just as importantly, technology has allowed me to connect with people all over the world who share an interest in Alzheimer's disease. 

Through the use of technology, I've formed friendships with other authors who have written about personal experiences with the disease. 

Vicki Tapia, author of Somebody Stole My Iron, also became the caregiver/decision-maker for two parents diagnosed with Alzheimer's/dementia. 

Through conversations with Vicki, I thought people who were interested in Alzheimer's Daughter would also like to know about Vicki's book, Somebody Stole My Iron. 

Below is my interview with Vicki, along with her book description, an excerpt, her biography, and ordering information.

Be sure to click the Goodreads Giveaway link at the bottom of the page for a chance to win Vicki's book. 

Interview Questions

When, why, and how did you start writing?

My writing “career” started decades ago, journaling about a summer romance in a small, line-filled ledger with a red cover. From that time on, journal writing has been the means by which I’ve processed the twists and turns in my life. Over the years, I have found that my journal entries are proportional to my stress level. There’s something about the writing process that helps me clarify situations, but also provides me with solace in times of turmoil or sadness. I call it “writing therapy.” Not surprisingly, throughout the years of caregiving for my parents, I was especially drawn to journaling in an attempt to make sense of what was happening...how my parents were changing and how it affected and ultimately changed me. Writing was the one constant in my life that made no demands and asked nothing in return. 

What inspires you?

Traveling the dementia road with my parents, I found few practical resources available to guide or help me cope. This inspired me to take action and transform our family’s story from a journal into a book, in order to share what I’d learned with others in similar situations. After friends and friends of friends read my unpublished manuscript and expressed how useful and relevant they found the story, I was further inspired to pursue publication.

Do you have a special place to write?

Although I’m actually typing on a keyboard, I still think of it as “writing,” and I do have a special place…sitting (or standing) at my kitchen breakfast bar. However, I’m not limited to this location and writing can happen anywhere my Mac is situated. Admittedly not nearly as convenient or user friendly, I’ve occasionally used my iPad mini, with a little portable keyboard, in airports, airplanes and hotel rooms, when my laptop has been left behind. 

Describe your writing process.

Well, I wish I might say that I am “very disciplined” and set aside a set number of hours at the same time each day to write and that I ignore all extraneous distractions. Doesn’t happen. Wish it did, but it doesn’t.

When writing, I enjoy the details and the research involved in the creation of the story. I have productive writing days and not-so-productive writing days. As I tell my husband, it seems I either have “word diarrhea” or “word constipation.”

Life distracts me in many ways, most of which I’d label as “good” distractions…those of my family, who are truly the most important part of my life. There are other distractions that I’d categorize as “busywork,” but unavoidable (housekeeping, paying bills, errands, appointments).

Promoting Somebody Stole My Iron takes effort each and every day. Social media distracts me. Walking my dog distracts me. Sometimes, it seems that writing is the last activity on the list! Somehow, though, I manage to find time to write, although it’s often in fits and starts. 

Yesterday I read an article that suggested setting aside one hour a day specifically to write and keeping that hour sacred. My goal is to put that recommendation into practice, starting now!

Thank you, Jean, for this opportunity to connect with your readers!

Somebody Stole My Iron: A Family Memoir of Dementia
By Vicki Tapia

Genre: Memoir
•    Family
•    Relationships
•    Aging
•    Eldercare

Book Description:

Somebody Stole My Iron chronicles a family’s journey down the rabbit hole that is dementia. After Vicki’s mother was diagnosed with Alzheimer’s disease, followed closely by her father with Parkinson’s disease-related dementia, the 3 of them embarked on a sojourn that was heartbreaking and painful and at times, sadly humorous. What began as a diary to help the author cope, morphed into an inspirational memoir, filled with personal lessons learned along the way, ideas/tips for managing the day-to-day ups and downs of dementia, as well as useful information from experts within the field of Alzheimer’s research. This conversational narrative, sprinkled with both laughter and tears, offers a sense of hope to those who lives have been intimately affected by dementia, letting them know they aren’t alone. 

Excerpt from Somebody Stole My Iron: A Family Memoir of Dementia

I arrived at my mother’s apartment at 2 p.m. one afternoon. Upon knocking and hearing her invitation to come in, I opened the door and was greeted with her shocked face, as if she couldn’t fathom why I was there. She cautiously ventured, “What are you doing here? It’s time for bed.” As my focus returned, I realized my mother was sitting in front of me, on her bed, completely naked.

“Look outside,” I replied as gently as I could, “Is it dark out?”

She turned and gazed out her window at the clear, azure blue sky. “No,” she replied, matter-of-factly.

“You can go to bed when it gets dark outside, okay?”

I was immediately struck with the same recurring thought that, in so many ways, dealing with demented people is like living with toddlers.

The administrator at Tendercare Cottages informed me that following a move to a new facility, it takes the elderly about 90 days to adjust. It had been more than 90 days, and Mom had still not adjusted. If anything, the move to Tendercare Cottages seemed to have accelerated Mom’s decline, as her dementia was more and more noticeable. The latest development was her declaration she could no longer read. 

“There is no sense in bringing me any more magazines, I can’t read anymore,” she said with resignation in her voice.

What could I possibly say in response to that? I looked at her with compassion, but couldn’t stop thinking about how one of her few remaining pleasures was now fleeting. I supposed I no longer needed to continue the search for her eyeglasses, which had mysteriously gone missing.

Biography:

Somebody Stole My Iron is the first book-length publication for author Vicki Tapia, who in a former life, wrote for lactation journals. She retired from her career as a lactation consultant to direct her energies toward writing. She is currently at work on a new book, which will focus on women’s issues at the turn of the 20th century. 

Vicki is the mother of 3 grown children, and Nana to 7 grandsons and a granddaughter. She lives in south central Montana with her husband and mini-Schnauzer. You are quite likely to find a picture of Vicki and her dog on her Twitter feed or Facebook page.


Purchase Somebody Stole My Iron 
(Available in paperback and Kindle editions)
Amazon 
Barnes and Noble 
Praeclarus Press
Amazon UK 


Vicki Tapia is a 2015 High Plains Book Awards Finalist


Goodreads Giveaway
Click on the above link to win a free copy of 
Somebody Stole My Iron
1 of 3 to be given away on August 1st.
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