A memoir of loss, memory by memory... To read chapter excerpts, click on chapter titles in the left sidebar. To order Alzheimer's Daughter, click on the picture of book below.
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
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.
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
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
http://www.theseniorlist.com/2015/08/alzheimers-daughter-meet-author-jean-lee/