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.

Friday, November 27, 2015

Thanks For New Friends

Still feeling the turkey and stuffing bloat, yet hiding from the claustrophobic, fight-to-survive Christmas shopping, I’m opting to warm up to the end of the year by munching on left over apple pie and listening to Christmas music with a pot of turkey noodle soup simmering in the background.

As December peeks round the bend I’m thinking back on November, still counting my blessings. At the top of my list is family, but not far behind is a small group of four people I’ve never met. Even though I’ve never stood in their presence, touched their hands, or shared a hug, these four people have become very important in my life. It’s amazing, with technology, how we can come to know another and call them friend.

Last January, on what would have been my parents’ 67th wedding anniversary. I published Alzheimer’s Daughter after I’d worked on it for four years. The story wouldn’t leave me alone even though I’d tried to stop writing many times along the way. It painfully whispered out of me, as though I was telling a friend about my journey in hushed tones with tremoring hands over coffee. The manuscript would wake me up in the night, talk to me as I was driving, grant me powerful phrases when I was cooking, doing laundry or running errands. I joined a writing group and a seasoned editor thought the story was worth telling. She helped make it something that people might want to read. But even as I pushed the ‘publish’ button, I was afraid I might be struck by lightning for telling such a private story.

Reviews started rolling in. I braced myself every time I saw a new review. I was shocked because they were kind and compassionate, thanking me for writing, for sharing a story that could help others.

In May, Marianne Sciucco, author of Blue Hydrangeas contacted me, saying she’d read Alzheimer’s Daughter and wondered if I’d like to collaborate through June, Alzheimer’s Awareness Month. I told her I’d read a lovely book by Vicki Tapia, Somebody Stole My Iron, and we asked her if she’d like to join us. Through collaboration, we learned so much about reaching out to caregivers and others interested in Alzheimer’s and dementia. We emailed nearly daily, and began using Google Plus to live chat together.

We stayed in contact as the months ticked by and read everything we could find written in a positive tone. We were struck by the beauty of What Flowers Remember by Shannon Wiersbitzky and On Pluto by Greg O’Brien. They joined us for a November collaboration to raise awareness for Memory Screening and Caregiver Appreciation Month.

Hopefully we’ve accomplished good for the cause of Alzheimer’s and dementia, but on a personal level these people have become dear friends to me. They are the people who share my story, know my journey and have given me the courage to come out of the dark corner in which I hid, afraid to speak about the personal disease which takes a toll on so many families. They’ve pushed me to speak up, move the disease into the light, and help change the voice of Alzheimer’s.


Marianne Sciucco said...

Thanks for writing this Jean, and I am also so grateful for you and all you've done to raise Alz awareness with your beautiful book and your tireless efforts. Here's to a long friendship!

Unknown said...

Lovely, Jean. Thank you...and I feel the same about the 4 of's nice to know that good things can arise from the ashes of Alzheimer's...