Stellar Alzheimer’s Resource

As a an individual and a published author who always strives for truthfulness, I would not say the following if I didn’t believe it:

AlzAuthors offers the most comprehensive collection of books and blogs about Alzheimer’s disease and other dementia.

And in the spirit of full-transparency, I am on the Board of Directors for AlzAuthors but would not be on the Board if I didn’t believe in this organization’s Mission and Vision:

A community of authors sharing Alzheimer’s and dementia stories to light the way for others to lift the silence and stigma of Alzheimer’s and other dementias.

I was recently privileged to lead our entire management team through the legal maze of applying to be a non-profit corporation with IRS 501(c)(3) tax-exempt status. Almost without exception, our management team has footed every bill that has come our way and we have gladly done so. Blessedly, late last year and early this year, we were on the receiving end of benefactors who believed in our work and generously helped us become a more global presence in the world. Their generosity encouraged us to think bigger.

Alzheimer’s and other dementias seem to be here to stay for now, but so are we. We will endeavor to always fulfill our Core Commitments as we move forward to make an impact in the lives of those affected by a disease that is always fatal.

CONNECT writers and readers by providing easy access to books, blogs, and other resources.

HONOR the personal journeys of those impacted by Alzheimer’s and other dementias.

PROMOTE works from around the world, welcoming a diversity of experiences.

ADVANCE the understanding Alzheimer’s and other dementias through collective knowledge.

ENCOURAGE healing by embracing the power of vulnerability, letting others know they are not alone.

Connection through stories

Stories can help us see no stranger. – Valarie Kaur

I recently listened to a TED talk wherein Valarie Kaur spoke of 3 Lessons of Revolutionary Love in a Time of Rage. She challenged me to find a connection in each face I meet along the way.

Five years after my father’s death from Alzheimer’s disease, I decided to share my family’s story so that others might find comfort in the commonality that exists from our shared stories. To be sure, with just under 6 million people in the United States diagnosed with the disease – and multitudes more globally – most of the world’s population has Alzheimer’s disease in common.

We don’t feel better that someone else has experienced or is experiencing this dreaded always-fatal disease, but we do find comfort in the fact that we are not alone. We can acknowledge that many walked this same path and came out on the other side; our active struggle will eventually come to an end.

After my father’s death in 2007, I was saturated in grief and happy to walk away from observing my father’s heart-rending decline. While gasping for breath through my tears, I also experienced a Phew! I’m glad that chapter of my life is over! 

Not so fast.

Not only was that chapter not over, but forty-four additional chapters begged to be written. And so I jumped back into the world of dementia because my journey had not ended – it had merely changed its direction. As I mentioned in an earlier post, My extraordinary success as an author, within months of publishing my first novel, Requiem for the status quo, I was able to celebrate the fact that others benefited from my work of love; people saw their story in mine and dared to hope they too would become a caregiver survivor, as did I.

In the twelve years since my father’s death, I can’t meet someone without Alzheimer’s disease or other dementia becoming front and center because Alzheimer’s is everywhere. I absolutely hate that so many of us have that story in common, but I am glad that we can connect with each other within the commonality of our shared experiences.

 

Requiem: a story for now, but hopefully not forever

The word, requiem, in the context of my novel, Requiem for the status quo, refers to an act of remembrance as it relates to the subject matter of my novel.

  • Remembrance of how a loved one was prior to Alzheimer’s or other dementia taking over their lives;
  • Remembrance of how the family caregiver’s life has been forever changed when his or her new normal looks nothing like the predictable normal the caregiver previously enjoyed; and
  • Remembrance of how the technique that worked to calm and care for a loved one just one minute earlier must be discarded, while the scramble to discover what works now must begin in earnest.

I would truly love for my novel to become irrelevant. For some books found on the shelves of libraries and bookstores, the treatment of the subject matter has become antiquated. The content itself may still be extremely worthwhile for the reading public, but those readers can no longer trust that what is being presented is current and/or relevant.

That is my wish for my novel, a novel that was inspired by my own experiences as my father’s caregiver. I used literary license to change certain facts, but the storyline for both the primary character, Colleen, and her father, Patrick, and for all the other real-life characters found on its pages, is a direct reflection of the personal and professional opportunities that arose from my involvement with a disease that as of this date, is always fatal.

My suggestion to you and those whose lives have been touched either directly or tangentially by the cognitive issues that occur on the pothole and speedbump-filled dementia highway, is that you purchase or borrow a very readable and relatable story of people like you and me who may never escape a disease that sometimes destroys families, but oftentimes makes them stronger. Requiem for the status quo eBook is free for Kindle Unlimited subscribers and only $4.99 for those who are not. The paperback is currently offered on Amazon for under $15.

Please read it now before my wish for irrelevancy comes true.

 

My Alzheimer’s family caregiving journey

My father during WWII

I had the privilege of being my father’s caregiver during his multi-year struggle with Alzheimer’s disease that ended with his death in 2007. Five years after his death, I started writing my debut novel, Requiem for the status quo, to be released by an independent publisher, Black Rose Writing, on July 20th. And now five years since I started my novel, Requiem will be available to everyone in just 30 days. My debut novel was inspired by my father’s and my caregiving journey and is dedicated to the man whose later years was robbed by a disease that is always fatal. The book’s dedication reads: Dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve.

I am in the very distinct and healthy position of understanding that realistically, as a debut author I cannot hope to be an instant and resounding financial success. But that’s okay, because for me it has never been about the money, but very much about helping those who are experiencing or have experienced an Alzheimer’s caregiving journey similar to mine. For that reason, most of my “book tour” will encompass senior centers in the region, as well as senior living residential communities where I hope to hold readings and sell my novel to seniors at a highly-discounted price. I know it is said that when trying to fill an auditorium, it’s all about getting butts in seats, but for me, it’s about getting books into laps.

And that’s what I’m going to do.

Requiem for the status quo is currently available for preorder at Black Rose Writing, enter discount code PREORDER2017 before July 20th for a 10% discount. You can also preorder Requiem at Barnes & Noble right now, and Amazon will be providing preorder opportunities in the days ahead. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.

 

Club Alzheimer’s

No one wants to be a member of a club characterized by a disease that robs a person of their cognitive function and is always fatal. Unfortunately, as of this writing, 5 million Americans (many more million in other countries) are living with Alzheimer’s disease or other dementias. Here are a few more facts extracted from the most current Facts and Figures document published by the Alzheimer’s Association:

  • In 2016, 15 million Americans provided unpaid care for people with Alzheimer’s or other dementias;
  • That equates to 18.2 billion hours of care valued at $230 billion;
  • 1 in 3 adults dies with Alzheimer’s or other dementia;
  • It kills more than breast cancer and prostate cancer combined;
  • Since the year 2000, deaths from heart disease have decreased by 14% while deaths from Alzheimer’s disease have increased by 89%;
  • Every 66 seconds, a person develops the disease.

Continue reading “Club Alzheimer’s”

A winner is just a loser who tried one more time

I am positive proof of that statement.

Let me say, I’m not fond of the word “loser” but I’m willing to use the word in this context.

Confession time for me: after four years of pounding the pavement/internet trying to get my books published, I seriously considered walking away. I’m not proud of that revelation, but I think after awhile, the prolonged efforts in which many of us are involved start to lose their shine, don’t they? They feel cumbersome in their fruitlessness.

Until they bear fruit.

That is the simple lesson here: nothing comes easily. Nothing. There is no such thing as overnight success or instant stardom. The instances of such anomalies are so few, they’re barely a blip on the timeline of creation. Continue reading “A winner is just a loser who tried one more time”

The making of REQUIEM

Family walk to end Alzheimer’s

One and a half years ago, I packed up all the research on which I relied for my first novel, REQUIEM FOR THE STATUS QUO (to be published by Black Rose Writing, summer of 2017). As you’ve read from the synopsis included on my Home page, this novel spotlights a family’s struggles with the tangible and emotional elements inherent when battling a disease that is always fatal; a disease that gives you daily – if not hourly – reminders of its devastating effects.

The research materials I packed away consisted primarily of the caregiving journals I kept while taking care of my father during his Alzheimer’s disease journey. That research also included reams of paper I organized into multi-tabbed folders containing the various doctors’ reports and findings from the many years of my father’s disease journey. Continue reading “The making of REQUIEM”