Wednesday, November 25, 2015

Sharing Our Caregiver Stories Helps Others Cope

Today's guest blogger is Jean Lee, author of the painful and beautifully written memoir Alzheimer's Daughter. Jean reached out to me via Twitter and introduced herself after reading Blue Hydrangeas. She told me she loved the story and that it reminded her of her years caring for her own parents. She said she’d written her own book and asked if I’d be an advance reader. Of course I said yes. Thus began a lovely friendship and a strong collaboration as authors dedicated to raise awareness of Alzheimer’s disease. She is a driving force in #AlzAuthors Ending the Isolation ofAlzheimer’s, a tireless advocate for caregivers, and a brilliant writer. Today she shares a little of her own story, and how writing her own book helps her help others.  She also shares something about the other #AlzAuthor titles in our collaboration. Jean has been featured on this blog several times. Welcome back to Adventures in Publishing Jean!

Sharing Our Caregiving Stories Helps Others Cope
by Jean L. Lee, author of Alzheimer’s Daughter

Caregivers. We are all caregivers. As humans we care for one another, or we should. Most especially, we care for those close to us.

  • As a youth I loved and respected my parents, a form of caring for them in my child-like way.
  •  As a young wife and mom, I cared for my husband and children.
  • As a teacher, I cared for my students.

But the logical timeline of maturation, love, and respect tipped topsy-turvy when my parents reached their eighties. They slowly began to lose their minds, act irrationally, and I became concerned for their safety. I sought out medical treatment, and they were both diagnosed with Alzheimer’s disease on the same day. 

Over the next decade I became the parent to my parents. I gradually, painfully made decisions, which they opposed in order to protect their well-being. In the process, I felt the guilt of taking everything away from the people had given me everything.

As I struggled to keep the pieces of my life together––my marriage, my own family, my career and the care of my parents––I grasped for resources, but found few. I am a positive person, therefore I sought uplifting resources, but much of what I read was written with a negative undertone about the ill treatment of a caregiver by an unreasonable loved one, about adult siblings who fought, about children who had grown up with angst toward a parent which continued through caregiving years. Even so, every time I found a kernel of truth, I felt as though I could keep going, someone else was brave enough to share this upside down world as well. 

I came to the conclusion that sharing my story might help others.

Alzheimer's Daughter details my journey caring for my parents. It is written with wincing honesty about the cruel effects of the disease, but a WWII love story held together by faith and family is contained within the pages.

Over the past several months, four other authors from across the country and I have crossed paths, all of us affected in some way by Alzheimer’s disease/dementia. 

For the month of November, the five of us have joined together in recognition of National Caregiver Appreciation Month and National Alzheimer’s Disease Awareness Month to recognize those unsung heroes, family caregivers. From each other we learned that all of us felt compelled to write our books, hoping to make a difference…hoping that we might make the pathway of others traveling this road a little less painful and lonely. 

Somebody Stole My Iron, by Vicki Tapia

Vicki details the daily challenges, turbulent emotions, and painful decisions involved in caring for her parents. Laced with humor and pathos, reviewers describe her book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer's/dementia patient's family.” Vicki wrote this story to offer hope to others, to reassure them that they’re not alone.    
What Flowers Remember by Shannon Wiersbitzky

Shannon writes this work of fiction through the eyes of a small-town preteen girl, Delia, whose elderly neighbor, Old Red Clancy is failing mentally. The aged gentleman has to be placed in a care facility, but Delia will not let him wither away. She devises a way for the whole community to remind Old Red how important he has been in all of their lives.

On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

Diagnosed with early-onset Alzheimer’s, Greg O’Brien’s story isn’t about losing someone else to Alzheimer’s, it is about losing himself a sliver at a time while still fighting to live with Alzheimer's, not die with it. 

Blue Hydrangeas, an Alzheimer’s love story by Marianne Sciucco

A pair of retired Cape Cod innkeepers struggle with the wife’s Alzheimer’s.

For more information about caregiving and caregivers please follow #AlzAuthors during National Caregivers Appreciation Month, November 2015, or find us on Facebook.

You may read my interview with Jean here and my review of Alzheimer’s Daughter here.

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