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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Inspiration

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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Guest Post: Bonds, License Plates, & Semipostals

25 Thursday Feb 2016

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Guests, Help Stamp Out Alzheimer's, Inspiration, Life After Caregiving, USAgainstAlzheimer's, Washington

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alzheimers, alzheimers advocate, alzheimers funding, alzheimers semipostal, dementia, help stamp out alzheimers

Image courtesy of Lynda Everman

I’ve often said that when your life is touched by Alzheimer’s or another form of dementia, you are automatically admitted to “the club.” It’s a club you never knew existed and a membership no one would ever seek out on their own. However, it doesn’t take long to realize your membership card came with guaranteed friendships with some of the most compassionate, inspiring people you’ve ever met.

For me, one of those people has been Lynda Everman, Founding Member of ActivistsAgainstAlzheimer’s, ClergyAgainstAlzheimer’s, WomenAgainstAlzheimer’s, and the Faith United Against Alzheimer’s Coalition. Lynda is like the energizer bunny; she never stops, and her determination to drive toward a world without Alzheimer’s is limitless.

Lynda also founded Help Stamp Out Alzheimer’s. She and Kathy Siggins have worked (and continue to work) tirelessly to urge lawmakers to pass the Alzheimer’s Disease Semipostal Stamp Act (H.R. 3092) that will require the issuance and sale of an Alzheimer’s semipostal (fundraising) stamp. Look for an upcoming post that will include more information on this project, including ways you can help.

I’d like to thank Lynda for allowing me to post this poignant essay. About the piece, Lynda says, “I’m moved to share with you this essay that I wrote some time ago as, more than anything, it sums up my philosophy on what we must do to end Alzheimer’s. . .and hopefully explains some of my tenacity for the semipostal.”

 

Bonds, License Plates, & Semipostals

Image courtesy of Lynda Everman

My husband was in the U.S. Marine Corps for only 4 years, but they were transformative years. The eldest son of a Conscientious Objector, he was 17 when he enlisted and was discharged 4 days short of his 21st birthday. He was a generous man, a man of principal, an innovator, a contributor, and very protective of all that he loved, especially his wife. One of his expressions was, “Nothing bad will ever happen to you on my watch.” Unfortunately, some things are beyond the control of even the best of men. For 15 years Alzheimer’s attacked the very fiber of our lives and claimed it’s prize at his death in March of 2012.

Richard was a Principal Systems Analyst for the University of California. A high school drop out and a voracious reader, he designed & set in place student information systems that were adopted nationwide and are still intact & vigorous today. In a bold and unconventional move in the 80s, he took the University of California, Irvine off the mainframe that was shared with the 5 southern campuses at UCLA and introduced personal computers to our campus. When his colleagues on the other campuses saw that it worked (and that he didn’t get fired!), they quickly followed.

Another of his favorite expressions was, “How you perceive a problem is how you solve it. Perception is reality.” It is this expression that brings me to this discussion of bonds, license plates, and semipostals.

I’ve asked my Senators and Congresswoman to support a minimum increase of $400 million in funding for Alzheimer’s research and patient & caregiver programs in FY 2017, as well as all aspects of the Alzheimer’s Action Now initiative. We’ve all read it: the federal government spends roughly $270 on Alzheimer’s care for every dollar it spends on Alzheimer’s research. So, unless and until we give our researchers the funds they need to achieve success at the bench and in our clinics, we will continue a downward spiral of needless suffering and loss.

Let me urge all who are reading this to move away from the philosophy of paucity and embrace the belief that we must use EVERY means available to defeat this formidable opponent. Of course we will continue with our individual and collective efforts; we will continue to walk, row, bike, hike, climb mountains, knit caps, bake brownies, have garage sells. . .and all manner of activities to raise awareness and funds. But Alzheimer’s is relentless and we, as advocates, must be as well. So we must identify and use any and all viable funding sources going forward: at the municipal level, at the state level, and at the federal level.

There are many in our community who believe that if we ask for one thing, we lessen our chances of asking for and receiving something else. I have to disagree. Of course, there is the risk that our requests will fall upon deaf ears; but there is also the hope that our message will get through. This is a huge and serious problem that requires our best efforts to protect the very essence of what makes us human: our memories. Anyone who has loved another, whether it be a spouse or partner, a child, a sibling, a parent, or a friend knows that we would stop at nothing to protect that individual. I know I would do that for those I love and that Richard would have done that for me. As advocates we must do no less. Let’s pull out ALL the stops and implement legislation and programs for bonds, license plates, semipostals and any and all initiatives that will decisively and quickly advance our goals and leave a legacy of a world WITHOUT Alzheimer’s!

Rest in peace, my beloved husband, and know that I will not rest until a cure is found! ‪#‎ENDAlz ‪#‎SemperFi

~ Lynda Everman

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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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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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