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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Books

Book Review: Elegy for Mom

28 Thursday Jul 2016

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

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Tags

alzheimer's books, alzheimers, alzheimers caregivers, caregiving, dementia

Elegy-for-Mom_BookCvrI’m often asked to review books on the topic of Alzheimer’s/dementia caregiving. I’d love to have time to get to all of them, but with limited bandwidth, I’m forced to pick and choose. Today, I’m happy to share Elegy for Mom: A Memoir of Family Caregiving, Alzheimer’s, and Devotion, by Vicki M. Kaufmann. At just over 100 pages, it’s a quick, easy read, yet covers a lot of ground!

In writing Elegy for Mom, Kaufmann’s goal was to share useful ideas and resources based on her own experience caring for her mother. To the degree possible, she wanted not only to offer support, but also to help bring meaning to the journey and reveal some of the blessings that can be found along the way.

Although the author has a background as a counselor, the book is really a very personal look at caring for a loved one with Alzheimer’s. In fact, Kaufmann states early on that despite her clinical experience, she was unprepared for the job of caregiver.

She describes feeling emotions so many of us can relate to: first comes denial, followed by anger and depression, and finally, resignation. Kaufmann believes caring for a family member is a spiritual calling and often a “pathway to new levels of grace, courage, creativity, and love.” This resonates with me; through my own journey with my mother, I found courage I didn’t know I had, became a more compassionate human being, and felt a depth of love I didn’t know existed. Ultimately, like the author, I found purpose in sharing our story to help other families.

While no one would choose this journey, I truly appreciate those who can find something positive in the experience. Long-time caregiver and leading advocate Meryl Comer refers to this as “flipping the pain,” which is so fitting. We can wallow in grief and sorrow, or we can find something to be grateful for and even use our experience to ease the pain of others and affect change. Choosing the latter doesn’t mean there will never be sorrowful times when tears flow like a river; it just means that at the deepest level, we choose gratitude over bitterness.

vicki-imgElegy for Mom is filled with moving original poetry, snippets from Kaufmann’s personal journals, family photographs, and samples of her mother’s original artwork. Each chapter tackles a unique sub-topic, ultimately painting a picture of what could be any family making their way through life with Alzheimer’s – one day at a time.

Throughout the book, the author also includes tips for caregivers, grouped by topic: making the most of visits, dealing with the stress of caregiving, finding the best facility, and even simple affirmation exercises to fuel the spirit of the weary caregiver.

I found Elegy for Mom to be a lovely blend of storytelling, practical tips, helpful resources, touching poetry, and wonderful artwork. It’s a unique compilation based on one family’s experience – both a loving tribute to the author’s mother, Sophia, and a thoughtful, reflective gift to other caregivers. Kaufmann succeeded in crafting a gem that would make a great addition to any collection.

* Update (08.14.16) – Elegy for Mom has received a gold medal in the “Health and Fitness” category and a silver medal in the “How To/Self-Help” category in the Florida Authors and Publishers Association annual contest. Congratulations to Vicki Kaufmann on this well deserved recognition!!

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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'sI’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.

 

 

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A Story for Valentine’s Day & Beyond

13 Saturday Feb 2016

Posted by Ann Napoletan in Advocacy and Awareness, Blogging, Books, Caregivers, Celebrities, Face of Alzheimer's, Helpful Resources, Inspiration, Tips, USAgainstAlzheimer's

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alzheimer's books, alzheimers, Alzheimers advocacy, alzheimers caregiving, b smith, barbara smith, before i forget, dan gasby

coverLast fall, I had the pleasure of attending a WomenAgainstAlzheimer’s dinner where Barbara (B.) Smith and husband, Dan Gasby, were honored for their Alzheimer’s advocacy work. You may know B. as a chef, restaurateur, entrepreneur, author, lifestyle expert, television host, magazine publisher, or supermodel – this lady has quite a resume!

What you may not know is that Barbara was diagnosed with younger onset Alzheimer’s in 2013 when she was just 64 years of age.

Today, Dan and B. work tirelessly to bring attention to the impending social crisis that is Alzheimer’s disease. They’ve recently written a book entitled, Before I Forget: Love, Hope, Help & Acceptance in Our Fight Against Alzheimer’s, chronicling their story, and whether you have been touched by Alzheimer’s (yet) or not, I suggest you pick up a copy and read it.

Dan writes with a courage and forthrightness that we don’t always see. He shares the good, the bad, and the ugly, in an enlightening and even validating style for those of us who have been through the journey. As I read each page, I found myself nodding, “YES, I’ve felt that way” or “Oh, I remember when that happened to us.”

Throughout the book, Dan shares practical tips based on his own experience. He discusses how this journey has affected the couple’s marriage and some of the things he has found help him cope on a daily basis. Before I Forget is a book about Alzheimer’s, but make no mistake – first and foremost, it’s a love story.

In a recent Alzheimer’s Talks call, Dan encouraged listeners to “do one thing” to move us forward in this fight. Read more about that call in my recap of a very compelling, thought-provoking hour with Dan. You can find it by visiting my friends at UsAgainstAlzheimer’s. Thank you to Trish Vradenburg and Virginia Biggar for allowing me to share my thoughts in A Love Story: B. Smith & Dan Gasby.

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