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, 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.