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, October 5, 2015

Ino's Love by Marianne Sciucco


If you are interested in books about eldercare, aging, and compassionate caregiving, you'll love Marianne Sciucco's latest release, Ino's Love. 

If you don't have time to read, you can download the audio version!

Below is a guest post by Marianne Scuicco about the premise of Ino's Love and the process of making her book into an audiobook.


I adore audiobooks, so naturally I want other audiobook lovers to be able to listen to my stories. This summer I teamed up with veteran television reporter and co-anchor Terry Murphy to bring my short story Ino’s Love to life. Terry is best known for her nine years (1990–1998) anchoring the tabloid show Hard Copy and, since 2003, reporting for the entertainment show Extra.   She has done a fantastic job with Ino's Love and I can't wait to hear what readers have to say. (Read on for my interview with Terry.)

Why turn a short story into a 28-minute audiobook?
Short stories are enjoying a resurgence these days as more and more people have instant access to books, including audiobooks, on their smart phones. Shorter reads are easier to digest; a reader can finish a story and experience a sense of resolution in a matter of minutes. And audiobooks make this even more convenient because they’re hands-free. I love listening to a great audiobook while I’m driving, cooking, and cleaning house, even when I’m lounging in the pool. Others do too. So making all of my books and stories into audiobooks is part of my marketing plan.
Of all of the stories I’ve written, Ino’s Love is one of my favorites. I absolutely loved writing it. I don’t remember what inspired me to create the characters of Ino and Ruby, but it must have been work-related because I was working as a hospital case manager at the time. My days were filled with helping patients (and their families) find ways to remain comfortable and cared for at home when faced with long-term illness or disability.
I also did a short spell as a home health nurse myself, and had a lot of experience as a nursing assistant caring for the elderly in nursing homes and as an LPN and RN in the hospital. I have a soft spot for patients like Ino. I respect those who care for them with integrity and help them to maintain their dignity.
This story displays the love that can exist between caregiver and client. There may be a few questionable actions on the part of Ino and Ruby (no spoilers!), but it’s the love between them that stays with the reader.
Ino’s Love was originally published in Kaleidoscope magazine, 2009.

Synopsis
Ino prepares a Christmas feast for her successful CEO son, but when he's too busy to spend the holiday with his mother, she shares her dinner and gifts with her home health aide. Sometimes, the people who love us best are not family.

Interview with narrator/producer Terry Murphy
What is it about Ino’s Love that motivated you to audition for the role of producer/narrator?
“Ino’s Love really touched my heart. Sadly today, so many adults either ignore or forget about their parents. And as I’ve gotten older, I realize it’s the little things from my sons that make me the happiest now. Ino also beautifully illustrates how simple gestures from a stranger can bring such joy to a senior citizen’s life.”
Were there any challenges to preparing for or performing this role?
“The biggest challenge for me was trying to capture Ino’s personality in my voice. And it was equally difficult alternating between Ruby and Ino’s ages. Ino’s Love was my first fiction recording, and I am very proud of my collaboration with you.”

Reviews
Since its publication as an ebook on Kindle in December 2013, Ino’s Love has been steadily gaining great reviews and is rated 4.9 stars on Amazon. Here’s what a few readers had to say:
“The author packs so much into so little space. This is what a short story should be.”
“Such a tender story of love...giving love, receiving love; reminding us again that it's not the "things" in our lives that are important, but the relationships.”
“A great writer can make you fall in love with a character quickly. Ms. Sciucco proves to be such a writer with this short story.”
“All I had left when the tale ended was the question: ‘Why isn't this included in the full disclosure for new home health aides?’ Because it is such a delightful short read, and yet it depicts just how important these people are to the patients they serve.”

Purchase Ino’s Love
Ino’s Love in audiobook is available on Amazon for $3.46, on Audible and iTunes  for $3.95. It’s also available as a Kindle book for $.99, and is free on Kindle Unlimited.

Connect with Marianne Sciucco


Monday, September 28, 2015

Tough Decisions


I was lucky. My parents lived to a wonderfully ripe old age, with relatively good physical health. I'd been raised to respect them. They scrimped and saved, always wanting more opportunity for me than they had during the Depression and at the end of WWII. They made good decisions for my welfare when I was young. Like cheerleaders holding invisible pompoms, they supported my choices as I grew up and raised my own family. My parents and I never experienced much conflict.

When the tables gradually began to turn and I saw my parents living in unsafe situations––eating spoiled food, suffering falls and broken bones––I knew I must do all I could to protect those whom had given me their all.

Easier said than done. Even with my heart in the right place, it took over three years to move Mom and Dad. I worried while I was at work. I stopped at their house daily. I jumped in panic every time the phone rang, or a message flashed on the answering machine. I prayed an incident with driving wouldn't hurt them or someone else.

Inserting yourself into your parents lives, making decisions for the people whom always made good decisions for you is nothing short of make-your-heart-ache hard.

As caregivers we become members of a club that no one wants to join because membership means our loved ones have lost the ability to care for themselves. 

If we can be brave enough to share our struggles with others who are in a caregiving role we can understand the other's sorrow. Through that empathy we may gain strength, comfort and even some solutions. 

At the time my parents were ill with Alzheimer's, I didn't have the courage to share with others. I was convinced I wanted to protect their dignity. And honestly, I didn't have the time to share. I was working too hard to stay afloat. It's been five years since Mom died and four years since Dad's passing, but the experience of taking over a loved one's life never leaves us. Now those experiences pour out in Alzheimer's Daughter. 

Monday, September 21, 2015

World Alzheimer's Day


I've got to be honest, I did not know today was World Alzheimer's Day until I logged into my Twitter account this morning. 

On the heels of my first Alzheimer's Walk last Saturday, another day to raise attention to Alzheimer's/dementia sparks many thoughts. 

First, I'd love to recommend two books in support of caregivers. 

Vicki Tapia's Somebody Stole My Iron will touch your heart as she describes caring for both parents, first her father, then her mother as  her mom's mind dissolved away from the disease. Vicki's book describes the sadness caregivers experience as we watch the glow of recognition leave the eyes of the ones we love, as they become a shadow of themselves. 




Marianne Sciucco's Blue Hydrangeas is fiction based upon Marianne's years of  experience working with Alzheimer's/dementia patients and their families. Her characters, Jack and Sarah, own a New England bed and breakfast until Sarah becomes confused with reservations and finances and is admitted to the hospital. Upon her discharge, Jack is faced with making difficult decisions for the love of his life. 




I read a blogpost in my Twitter feed this morning written by Pippa Kelly, @piponthecommons, a well-know Alzheimer's/dementia advocate from London, entitled ""Dementia's Where Cancer Was 40 Years Ago." Is It?" The post is well worth the read. I was intrigued by Pippa's conclusions, 
"If dementia is anywhere near where cancer was 30-40 years ago, it's in the realm of stigma reduction. The more we talk about dementia, the more we demystify it, the less fearful and more confident everyone becomes." 
Her term 'stigma reduction' will stick with me. 

I guess that's why there are organizations dedicated to Alzheimer's/dementia awareness. 

That's why we set aside days to ponder, pray, wish and strive for scientific advances and treatments. 

That's why we write blogs and books to share support. 

We do all of this to reduce the stigma of a disease that is painfully personal and private.

Thank you, readers, for all you do in your lives to bring closer the day that Alzheimer's and all dementias will have effective treatments and better survival rates like cancer does now.

Otherwise, you know, nobody's getting out alive.




Saturday, September 19, 2015

Walking to End Alzheimer's


This year, for the first time, I participated in The Walk to End Alzheimer's sponsored by the Alzheimer's Association: Greater East Ohio Area Chapter. 

As I walked today with a friend who asked me to join her team, we talked about our journey. Both of us agreed that it was difficult to keep our heads above water while seeking to make the best decisions on behalf of the people who were our moral compass for our entire lives. But in the years since our parents' passing, the experience has never left us. Now we can focus on offering support to those going through the journey. 

In a sea of hundreds of other people wearing purple, we carried flowers. Purple signified the loss of a loved one, yellow designated current caregivers, supporters of the cause carried orange, and most importantly blue indicated people diagnosed with Alzheimer's or dementia. Little children, teens, adults, boomers and elderly, as well as a few canines walked. Most touching to me was the little girl who skipped in purple shoes, and a woman my own age who pushed her tiny withered mother the entire way in a wheel chair. Whenever this lady encountered rough terrain, or cement steps, strapping teenage boys helped lift her mother's chair.

This event demonstrated the best in a community coming together for a good cause and multi-generational caring. I hope to participate  every year. Thank you Alzheimer's Association for making an outreach like this possible.

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/