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.

Sunday, August 23, 2015

An Alzheimer's Love Story


Last night I attended a picnic in my hometown and had the opportunity to visit with one of my dad's buddies. I was surprised when he told me he'd just finished Alzheimer's Daughter. 

I braced myself, preparing to be scolded for writing about the disease which took both of my parents'. Instead, he gave me a thumbs up and said, "You did a good job, Jean." 

I felt my unease replaced by a softness as I whispered, "Thank you for your kind words." 

He continued, "No one really understands what a caregiver goes through." 

During the four years I wrote, I envisioned my readers to be women like me, caregivers, caretakers, family members struggling to make good decisions for their loved ones.

Last week I received a note from a young woman in her thirties. Her grandfather recently died of Alzheimer's. She said Alzheimer's Daughter helped her understand what her mother had been going through as a caregiver——the things her mother never spoke of.  She also realized what she herself might go through if a caregiving role was thrust upon her at some future point. 

We never know who will read what we write and I never envisioned Alzheimer's Daughter having meaning for those older and younger than myself.

I've become convinced that caregiving is not something we prepare for or talk about enough. Countless daughters, sons, spouses, and partners of Alzheimer's try to give our best to the people who have given us everything, yet we remain shrouded in silence, not connecting with others who share our experience and could offer us support.  This daughter is thankful and humbled by your feedback. 

Friday, August 14, 2015

Timelessness of Music


Good music has a timelessness, regardless of the date it was released.

I love pop music. I'm not a classical girl.

Pop music energized my classroom when I taught. I'd download pop songs for every area of the curriculum, and kids counted on me to have the hits rolling when they be-bopped into the room. In collaborative learning situations, I'd say something like, "I'll give two songs to find the answer." The music would play in the background and as the second song wound to a close, students knew they'd better wrap up their group conclusions, and be ready to share with the class.

Music helped me through my years of caregiving for my parents. When we moved my mom and dad out of their home, my nephew gathered their CDs and made MP3 digitalized copies for family. My playlists run in random order, so at any time, I might hear top 40 songs bookended by songs from more than half century ago.

When I drive I like to keep up with pop music by listening to top 40 stations. I'm always amazed by the ability of today's music to bring back images and memories of my now deceased parents.

Since mom and Dad's deaths, I've been especially touched by Coldplay's "Paradise" and "A Sky Full of Stars." In my mind, these songs speak about pondering the eternal and the lasting love between two people that can endure past death, forever.

Most recently, I look forward to hearing Ed Sheeran's "Photograph."
http://youtu.be/SPKBtZHuzKY
(Sorry about the ads at the beginning of the video)

Granted my mom didn't wear ripped jeans, but Mom and Dad did, and I do

Keep their love in photographs, 
Where their eyes were never closing, 
Their hearts were never broken, 
Time forever frozen still. 

To me the most powerful line is, "It's the only thing we take with us when we die."

Thank you, Ed Sheeran, for recording this tender, timeless song.






Tuesday, August 11, 2015

The Senior List

Many thanks to The Senior List for including me as a guest on their blog.

http://www.theseniorlist.com/2015/08/alzheimers-daughter-meet-author-jean-lee/





Saturday, July 11, 2015

Laundry


Funny how a picture can trigger memories. 

I came across this image of old clothespins and was transported back to half a century ago, watching Mom do laundry.

We lived in a big old house built around 1920. When Mom and Dad bought the house they added indoor plumbing. The backroom, painted 1950s hospital green with a speckled linoleum floor, housed the chest freezer and the wringer washer. 

Clothesline strung back and forth from side to side across the room and collapsed drying racks waited to be useful on rainy days, but mostly Mom put clothes through the wringer washer into dilapidated peck baskets and hauled the wet wash outside to the backyard where two clothesline posts looked like wooden crosses stuck in the ground with two lines of rope strung between.

The pouch which held all of the clothespins was the bodice of one of Mom's dresses cut off and sewn at the waist and sleeves, then sewn to a hanger. As the line weighed heavy while mom pinned wet clothes she'd prop two wooden poles, taller than little-girl me, notched at the top, under the clotheslines so our clothes, sheets and towels didn't drag on the ground. Breeze caught the clothes and puffed them out like sails, the lines swayed. 

If a rainstorm cropped up, we'd run outside, and pull the laundry off the line, rehanging it in the backroom. I'd play peek-a-boo in and out of the laundry outside, but when it hung in the backroom during a dark, rainy afternoon, it looked like haunting ghosts. 

Honestly, I think clothes dried faster on a sunny, breezy day than they do in the clothes dryer. And oh the smell——so heavenly to crawl into bed at night in those sheets. Granted, the towels were a little scratchy, and most everything had to be ironed.

About all that ironing——Mom had a tall coke bottle she'd fill with water topped by a cork with a sprinkle head. She'd dampen the wrinkled clothes and wrap them in a plastic bag storing them in the refrigerator until she had time to press them. Often I'd come home from school to find her standing, ironing while watching General Hospital. 

Happy to have these memories float through my mind today. Kinda wish I had a clothesline, because today would be a great day to hang out the wash. And, oh what a great night's sleep I'd have. 

Does this post trigger any memories of the old times for you? 

Wednesday, July 8, 2015

Family Vacation

Last night I returned from a family vacation. Twenty-two of us on my husband's side of the family went to the gulf coast in Florida to spend a week together with my mother-in-law who is 88 years old. Both of our children and our five grandchildren attended.

While in Florida, we were also able to see my sister and her family, her two children and five grandchildren. 

So many memories of happy times with my parents, when our children were little, when time stopped for family, floated through my mind because all ten of my parents' great grandchildren were together. 

While away, I unplugged. It felt good to disconnect from media, play Uno with my 8-year-old granddaughter, and zoom trucks and read books with the little ones.

I always love to become immersed in a good book while vacationing, but I didn't have much time for reading between making peanut butter sandwiches and mac and cheese. 

Most of my book choices relate to Alzheimer's and personal experiences with the disease. Book covers draw me in. Quite some time ago, I'd downloaded a book with a stunning cover entitled What Flowers Remember by Shannon Wiersbitzky. The main character is a middle school girl whose life is affected by Alzheimer's. I completed the book on the flights to and from Florida. At the risk of being rude to my seat mate on the return flight, I told this very friendly woman that I was almost done with a wonderful book. She was a reader, so understood and wanted the title so she could also download. 

Here's my review. 


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
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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!