Alzheimer’s/Dementia

My Alzheimer’s family caregiving journey

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My dad, circa 1980s

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 less than 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.

 

Caregiving 101: when fiction meets reality

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I’ve written several articles over the years about the importance of assembling a caregiving team when caring for a loved one – a team that doesn’t necessarily rely on family because not everyone has a participatory family when it comes to these matters. That was certainly the case for REQUIEM FOR THE STATUS QUO‘s Colleen Strand while taking care of her father, Patrick Quinn. She sought help from her brother  but that was not something with which he chose to be involved.

REQUIEM, my debut novel, is now available for pre-order from my publisher, Black Rose Writing. You will receive a 10% discount with code PREORDER2017 if purchased before its release date of July 20th. Additionally, in the days ahead, both Amazon and Barnes & Noble will be offering a pre-order option leading up to the novel’s release. Ebook options will be available at most online book retailers as of July 27th.

Of all the life-changes we encounter during our journey, caregiving is one of  – if not the most – difficult speed bumps to get over.

Caregiving: the ultimate team sport suggests how one might use the strengths of each team/family member to handle the varied needs during the caregiving journey.

Family dynamics that hamper caregiving success exposes the need to let go of stereotypes or childhood roles that don’t serve siblings well as adults. If ever there was a time to work together for the greater good, taking care of a family member with dementia or other terminal illness ranks right up there at the top.

Solo caregiving addresses the needs of the person who appears to be strapped with fulfilling all the roles needed for a successful caregiving venture. The solo caregiver need not settle into those roles, however. The help of other, well-meaning individuals, can lessen that daunting task.  Certainly, much relies on the neighbor, coworker, even casual acquaintance, but said entities are a resource from which much assistance can be found.

Here are several more articles for the caregivers out there – and those acquainted with a caregiver – to provide some wisdom and encouragement through the tough times:

Why you should own a copy of REQUIEM FOR THE STATUS QUO

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REASON ONE: You don’t have to know someone with Alzheimer’s disease to benefit from this novel. Let’s face it, when you pick up a novel wherein cancer, murder, courtroom drama, homelessness, financial devastation, or horror are part of the storyline, you don’t put down the book because none of those issues have personally affected you. I mean, when was the last time you picked up a Steven King novel and said, “Man, this is totally irrelevant to me, I’ve never been terrorized by a car named Christinenor have I ever attended a prom where a girl named Carrie exercised her supernatural powers to ruin the evening for most everyone in attendance.” And even though no one – as of yet – has ever lived Under the Dome, you would still be glued to the pages of that novel (not so much the TV version) to discern how it would all turn out.

When you pick up a novel, you find yourself getting involved with the characters. While you’re wondering how the book may end, you read on to find out what’s going to happen next. Or maybe your eyes are opened about matters for which you previously knew very little and then you can’t wait to see where the storyline leads you. REQUIEM FOR THE STATUS QUO satisfies all of those curiosities.

REASON TWO: You do know someone with Alzheimer’s or other dementia – whether tangentially or intimately. You might be hesitant to read yet another technical treatise or article about the devastating effects of the condition, but you still want to learn more while being entertained at the same time. Did I say a novel about Alzheimer’s can be entertaining? Yes, and I’ll tell you why. The definition of entertainment isn’t just giggles and laughs – as Steven King’s novels clearly demonstrate. According to Merriam Webster, entertainment is also something diverting or engaging. Without a doubt readers will be engaged in the story of the Quinn family from page one when the patriarch of the family, Patrick, finds himself in a very inconvenient situation while stranded on an extraordinarily busy freeway in Seattle, Washington. And you will cheer for Patrick’s daughter, Colleen, as she struggles to redefine normalcy while craving even one minute of status quo. And believe or not, you will find humor in some of the least desirable circumstances faced by a variety of characters who are members of “Club Alzheimer’s.”

REASON THREE: You read Still Alice, by Lisa Genova – maybe you even saw the movie – and you became very sympathetic to those who have faced, are facing, and will face the ravages that Alzheimer’s disease has on families such as yours and mine. And if you were fortunate, you also read the memoir, Her Beautiful Brain, Ann Hedreen’s account of the challenges she faced raising a young family and caring for a mother who was “lost in the wilderness of an unpredictable and harrowing illness.” There is much to be gained by reading various genres on the subject, and quite frankly, not enough is being published in the fiction and memoir genres.

As of this writing, there are more than 5 million people in the United States with Alzheimer’s or other dementia, and worldwide, more than 44 million suffer with the disease. Alzheimer’s disease is not going away. The more awareness and compassion we possess, the more capable we will be of helping ourselves, and others, through this protracted disease journey.

MARK YOUR CALENDARS …

REQUIEM FOR THE STATUS QUO a Black Rose Writing release, will be available July 20th, 2017.

The Alzheimer’s caregiver: NOT a fictional character

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REQUIEM FOR THE STATUS QUO, to be released July 2017, contains fictional characters right out of yours and my reality. If your life hasn’t been impacted by caregiving for a loved one with Alzheimer’s or other dementia, you are at least tangentially connected to someone who has been.

  • A parent’s senior moments transform into hair-raising episodes of wandering and getting lost at all hours of the day and night during varied seasonal temperatures that may very well threaten their lives.
  • The husband who was Mr. Fixit for all home repairs, big and small, no longer knows how to use a screwdriver, and becomes combative when challenged.
  • A sister’s successful writing career is derailed when she can no longer write coherently or understand the written word.
  • The middle-aged next door neighbor pounds on your front door demanding entry to his home and threatens to call the authorities if you don’t immediately vacate the premises.

Variations of these scenarios abound, and within those story-like confines exist the caregivers who have been thrust into a role for which they were not prepared, derailing their status quo – their normalcy – beyond recognition. These same caregivers had very full lives before their days became what has become the caregiver’s  36-Hour Day. Any down time they enjoyed prior to stepping into their ill-fitting caregiver shoes has been filled with doctors’ appointments, loved one-sitting, and putting out fires. Carefully crafted family and retirement plans are no longer feasible because life as the caregiver once knew it no longer exists.

REQUIEM will give readers an intimate look at a caregiver’s day-to-day reality while also endeavoring to provide hope for what lies ahead. To be sure, there are no happy endings, but promises of resolution and lightness spring forth in the least likely of places and during some of the most awkward of times. Whether you are a caregiver, a former caregiver, or know someone who is, REQUIEM FOR THE STATUS QUO will become a most cherished and often-read bookshelf addition.

Club Alzheimer’s

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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.

My novel, REQUIEM FOR THE STATUS QUO, (Black Rose Writing publication, July 2017) spotlights one family’s experience in particular – the Quinn family – while also visiting other households affected by Alzheimer’s or other dementias.

  • Eddie and Katherine, a couple in their 40s. Katherine has a combination Alzheimer’s/Lewy Body dementia, a type of dementia that causes somewhat violent behavior and speech;
  • Frank and his son, Sean, the latter of whom suffers from a traumatic brain injury (TBI) incurred while on deployment in Afghanistan;
  • Victoria and George, a couple in their 80s, trying to crawl through the maze of George’s Alzheimer’s disease;
  • Rose and Sophia, sisters in their 50s, struggling with the effects of Sophia’s vascular dementia;
  • Donna and Kelly, partners in their 60s, experiencing the devastating effects of Kelly’s Parkinson’s disease and the dementia associated with her disease.

These are characters like you and I. They were living their lives the best they knew how, being good people and doing good for others, yet Alzheimer’s still managed to grab them by the throat and refused to let go.

The storyline is a difficult one but the way in which I have portrayed all of these precious people will touch your heart, and at times, your funny bone. No, there’s nothing humorous about the disease, but people will be people, and when they’re confronted with the impossible, they can find – or create – a bright side onto which they can find redemption and community.

I look forward to introducing you to my characters. Just a few more months before they’ll become a part of your life.

April Fools’ memory

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My sister and I as teenagers, and the rest of the family
My novel, REQUIEM FOR THE STATUS QUO, contains a scene where Patrick Quinn – many years before his Alzheimer’s diagnosis – wakes up his high school aged daughters on April 1st and announces that local public high school students have the day off to honor April Fools’ Day. His daughters attend a parochial school – church based – and when they hear of said day off, they become incensed.

The girls get out of bed – anger seething below the surface of their drowsy bedheads – cross their arms, and they yell, “That’s not fair!”

Patrick agrees, April Fools’ Day is no reason to have a day off from school . . . then he claps his hands together, and barely stifling a laugh, he says, “Gotcha!”

That exact scene happened to my sister and I – thus the reason why I had to include it in my novel. My father had the keenest sense of humor – a funny bone that stayed with him even while the plaques and tangles in his brain leeched the very life out of him. As a family, we were very fortunate that his humor survived until the very end. That is not always the case, as readers will discover when they meet the other characters in my novel whose disease journey is far from cool, calm, and collected.

REQUIEM FOR THE STATUS QUO, release date: July 20 2017.

Black Rose Writing, publisher.

Irene France Olson – me! – has signed with a publisher!

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fullsizeoutput_31aI’ll let you collect yourself, calm down, and come down to earth before I go any further with my announcement …

Okay, that’s enough time. REQUIEM FOR THE STATUS QUO is slated to most likely be published by the end of 2017, thanks to Black Rose Writing. I submitted my novel to them in October 2016, and received an e-mail on Tuesday, February 14th, stating that they feel strongly that my project will make a successful addition to their publishing house. The owner of the company further stated, “I am excited about adding an author with such high potential to the Black Rose Writing family.”  I have been in contract talks with the independent publishing house the past several days, and I confidently signed with them this afternoon.

I suggest you go to their website to sign up for their newsletter to get free e-books, deals, and exclusive content. The opportunity to do so can be found at the bottom of their Home page.

REQUIEM FOR THE STATUS QUO is my first novel, inspired by the five years I spent as my father’s caregiver. Of my two completed novels, and one work-in-progress, this is the manuscript in which I have been most invested. I mean for gawd’s sake, REQUIEM is why I started on this anxiety-ridden writing journey back in December 2012.

All you writers out there know of which I speak when I say the road to publication is a pothole-filled one with Dangerous Curves, U-Turns, and Dead Ends that terminate many a writer’s quest to see their book in print.

I am pleased with all of my novels but late 2016 I recommitted myself – and redirected my energies – to getting REQUIEM published. I believe in the story and absolutely feel many current caregivers, and future caregivers, will discover themselves on the pages of the novel and realize their struggles are the struggles of many. They are not alone. Consequently they will find reason to hope, and even to laugh, when they read about Seattle, Washington’s fictional Patrick Quinn family.

So Don Patrick Desonier, this celebration centers around you, the father for whom I would embark on a caregiving journey all over again, just to have more time with you.

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 Now, if you’ll excuse me, there’s a bottle of tequila that’s waiting to be opened and enjoyed … it’s not gonna do it all by itself, ya’ know. I may not be available for awhile.