Brought to Our Senses: Meet Kathleen H. Wheeler

18 Friday Nov 2016

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregivers, Family, Guests, Helpful Resources, Life After Caregiving, Sandwich Generation

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alzheimers, alzheimers books, alzheimers impact on families, alzheimers novel, dementia

Today, I’m happy to share a guest post from author Kathleen H. Wheeler. Wheeler’s new book, Brought To Our Senses, is a fictional work that explores the importance of family and forgiveness when facing dementia.

The novel tackles the impact a messy divorce has on a family, how Alzheimer’s affects already tenuous relationships, and the excruciating journey to obtaining legal guardianship.

Wheeler writes from her own experience as a young sandwich generation caregiver in the mid 1990’s. These days, she characterizes her life in terms of BA (before Alzheimer’s) and AA (after Alzheimer’s), terms I’ve often used myself. Those of us who have traveled this road know that to say it’s a life-changing experience is an understatement.

Please join me in thanking Kathleen for being with us to share her story.

A Guest Post by Kathleen H. Wheeler

Why choose Alzheimer’s as the focus of my new family saga novel Brought To Our Senses?

It’s a fair question. After all, Alzheimer’s is argued to be the disease feared most of all. The mind-robbing illness has a bad reputation and a stigma stifling discussion in mixed company. So why exactly would I tackle such a difficult subject, one so many avoid altogether or shrug off as hopeless?

The answer is simple: Alzheimer’s has transformed my life, an existence now measured in two distinct periods of time: BA and AA. “Before Alzheimer’s” was my life until 1996 when dementia came calling for my mother with a vengeance. She was only 62, and I was 30 with a newborn daughter at home. “After Alzheimer’s” is the last twenty years I’ve spent raising two children and dealing with my mother’s diagnosis, decline, and death from this monster.

My mother passed away in 2009 but dementia lingers like the familiar nightmare waking me in a panic and cold sweat. I’ve never faced anything more difficult or devastating in my life. Like it or not, Alzheimer’s has wormed its way into my present and future thanks to genetics. I am susceptible, as are my siblings and children, and this reality drives my waking hours and efforts.

For raising awareness through my story, I was recently recognized as an Alzheimer’s advocate by the Greater Illinois Chapter of the Alzheimer’s Association during the opening ceremony of the Walk to End Alzheimer’s on September 24, 2016. It was a humbling event. So many people work to raise awareness, to change policies and attitudes, to provide support and hope that my efforts seem small by comparison.

While some see my efforts as selfless, my motives are equally selfish because I advocate on my own behalf and that of my family. With all of our futures at stake, doing nothing is inconceivable. I desperately want a cure for dementia so that my children and their generation will never experience the devastation my siblings and I have witnessed. No one, whether age 85 or 40, should suffer through the tortured course of dementia.

That’s why I wrote Brought To Our Senses, and I had three goals for my book.

1 The Story: First and foremost, I wanted to tell a compelling story, one that just sucks you in from the get go. I’ve been drawn to reading and writing since I was a kid and have always wanted to write a novel. Once I grasped the premise for my book and realized what a great story it was, I just couldn’t let it go. I had to write it.

2 Build Awareness: I wanted to share the reality of the illness, from before a person is afflicted through the bitter end, and I wanted to emphasize the importance of strong family relationships to get through such an ordeal.

3 Give Back: Finally, I wanted to do something positive for the community, something that would help others struggling with the difficulties of dementia. For each copy of my book sold, I’m donating to organizations that support dementia patients, family caregivers, and research to find a cure.

I’m excited to share my book with the world and hope it will provide hope and inspiration to those touched by dementia. I’m never going back to the time “Before Alzheimer’s” and plan to look ahead and work toward a world without Alzheimer’s instead. It’s the ultimate goal for all of us who have lost a loved one to this disease.

About the Author:

kathleenwheeler

Kathleen H. Wheeler, author of the debut novel Brought To Our Senses, writes stories that sing because she cannot. A graduate of the University of Illinois, she has wordsmithed as a marketing communications professional for ad agencies and corporations since Nike first coined the slogan “Just Do It.” Wheeler is a music enthusiast and lifelong fan of a British musician known by a one-syllable nickname. Along with her husband and two children, she calls the Land of Lincoln home.

Look for Kathleen on Twitter and Facebook, and be sure to check out her blog!

Elizabeth Miller discovers that aging parents are a family affair when her divorced mother receives a deadly diagnosis and becomes a volatile patient. Forced to work with siblings at odds through the crisis, she learns when all is lost, family begs to be found.

Brought To Our Senses (Attunement Publishing, released November 1, 2016, paperback $16, ebook $9.99) is available now from all major online retailers. For more information, visit www.BroughtToOurSenses.com.

Motherhood: Lost and Found, a Memoir of a Mother’s Alzheimer’s

10 Thursday Nov 2016

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregivers, Family, Guests, Helpful Resources, Inspiration, Life After Caregiving, Sandwich Generation

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Alzheimer's books, alzheimers, alzheimers daughters, alzheimers memoir, dementia

Ann Campanella with her mother

Today I’m very happy to share a guest post from award-winning author and blogger, Ann Campanella.

As Ann and I exchanged a few initial emails, I felt an immediate kinship with her. Alzheimer’s is life changing. For me, that manifested itself in a strong desire to use my experience for good – to help others. I’ve always said that I need to know this journey was not in vain and that our story has purpose. Ann shares that sentiment.

“Like you I’m passionate about reaching out to those who need support in their journey through Alzheimer’s,” she said. “My mother lived with the disease for almost a decade and a half, and, at the time, I felt very alone. That’s part of the reason I hope to share my story…to give others an emotional road map through this kind of difficult life circumstance.”

Please join me in thanking Ann for sharing her uniquely beautiful story with the world.

_____

A Guest Post by Ann Campanella

My mother was a kind and gentle soul who loved words. She came from a family of writers and artists who had a deep appreciation for nature and family relationships. Every summer, when I was a child, we canoed on the clear waters of Lake George near her ancestral home in upstate New York, and she taught me that if I looked closely, I could see all the way to the bottom.

After having Alzheimer’s disease for fourteen years, my mother passed away. But I’m still plumbing the depths, looking for beauty, the way she taught me.

In her early 70s, Mom first began showing signs of Alzheimer’s at the same time my husband I were trying to start a family. We had just moved from Houston to North Carolina, and were planning to build a barn for my horse Crimson.

I had my first miscarriage as Mom’s memory began slipping.

motherhood_ebookcov My memoir, Motherhood: Lost and Found, tells the story of losing my mother to Alzheimer’s as I suffered through several years of infertility. For almost a decade, I walked a path of questioning who my mother was becoming and if I would ever be a mother myself.

I yearned to have my own children, yet I was thrust into the role of caretaker for my parents. My mother had always been kind and compassionate, so it was a shock when she wasn’t able to comfort me in my pregnancy losses.

In the beginning of her illness, Mom became angry and upset at her own confusion. I made regular trips across the state to spend time with and try to understand what was happening to her. In the book, I share my mother’s heart-wrenching anguish and our family’s bewilderment over her gradual descent into Alzheimer’s.

As my mother’s condition deteriorated, writing and nature were my solace.

I poured my emotions into my journals, and they became the backbone for my memoir. Writing provided a way for me to put some distance between myself and the grief I was feeling. When the pain was too much to bear, I would walk down to the barn. Some days, I would take a ride on my horse listening to the birds my mother used to love. Other days, I could do no more than lean my head against my horse’s neck.

Despite this decade of loss, a part of me felt vibrantly alive. Each loss made me more aware of the transient beauty around me. While my mother lost the ability to clothe, bathe and feed herself, I sensed her enjoyment of a gentle breeze or a sunlit window.

Mom often thought she was back at Lake George, at her childhood summer home. “Is that a sailboat?” she once asked me, pointing to a telephone pole in the parking lot of her rest home.

I was inspired by my mother’s will to live, her desire to connect even as her faculties slipped away. My faith, which had lain dormant for years, blossomed. As I learned to let go of what I had hoped for, I discovered gifts of grace all around me.

Motherhood: Lost and Found is my journey through my mother’s Alzheimer’s. It was not an easy road, but I am so grateful to have had those years with her. The memoir shares a story of transformation – how I lost the mother I thought I would have, but found, under the surface, a deeper appreciation for who she was and what it meant to be a mother.

author300 Ann Campanella is the author of the award-winning memoir, Motherhood: Lost and Found. Formerly a magazine and newspaper editor, her writing has been widely published. She blogs about her life and horses at Fields of Grace and is a guest blogger about Alzheimer’s at www.careliving.org, a blog created by Kim Campbell, wife of country music singer Glen Campbell. Twice, Ann has received the Poet Laureate Award from the North Carolina Poetry Society. She lives on a small horse farm in North Carolina with her family and animals.

Check out Ann’s website, and connect with her on Twitter, Facebook, and Instagram.

Guest Post: Books to Help You Travel the Rocky Road of Alzheimer’s

29 Monday Feb 2016

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregivers, Guests, Helpful Resources, Inspiration

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Alzheimer's books, alzheimers, alzheimers caregiving, alzheimers memoirs, dementia

Books to help you travel the rocky road of Alzheimer's I’m very pleased to share the following guest post from Jean Lee, author of Alzheimer’s Daughter. In the words of Jean, “The more voices, the wider the reach of the choir.”

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 and act irrationally. 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 they opposed in order to protect their well-being. In the process, I felt guilty taking everything away from the people who 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. I found books about the ill treatment of a caregiver by an unreasonable loved one, about adult siblings who fought, and about children who had grown up with angst toward a parent continuing 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 both parents who were diagnosed on the same day. It is written with wincing honesty about the cruel affects 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.

The five of us have joined together to recognize those unsung heroes, 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. Perhaps you will find comfort and support within our pages.

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.

Blue Hydrangeas by Marianne Sciucco

Marianne describes herself as a writer who happens to be a nurse. This work of fiction is based upon her care for the elderly. It’s a tenderly told love story about Jack and Sara, owners of a New England bed and breakfast. Sara is stricken with Alzheimer’s and Jack becomes her caregiver.

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.

Jean Lee wrote lesson plans for 22 years as an elementary school teacher. She had no aspirations to write a book, however when both parents were diagnosed on the same day with Alzheimer’s, her journey as their caregiver poured out on paper through Alzheimer’s Daughter. After the sadness of her parents decline, life brought her a joyful topic–triplet grandchildren. She is currently working on a series of books for ages 9-12 entitled Lexi’s Triplets, written through the voice of the family mutt. You can follow Jean’s blog, Alzheimer’s Daughter, or catch up with her on Facebook or Twitter.