Health & Wellness

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.

 

Kindness Fridays

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Today’s musing takes a different turn. The focus of today’s kindness relates to my daughter Erin’s never-ending, no-holds-barred editing offerings for all things having to do with the upcoming July 20th release of my novel, Requiem for the status quo.

Erin has been one of the most consistent editors of my work and what I appreciate so much about her input is that regardless of how much she loves and adores me – and she does – she is 100% honest in her comments about my writing. I always know, without a doubt, that when she criticizes/critiques me, she is doing so out of love.  

Erin wants me to succeed because she knows this project means so much to me.

In preparation for my July 29th book signing at the Northwest Book Festival in Portland, Oregon, I designed a bi-fold brochure to hand out to attendees, a brochure that introduces my book and its primary characters to those who will be browsing through the many booths and literary offerings at the festival. They may not be ready to purchase my novel right then and there, but they’ll take the brochure with them and perhaps from the comfort of their living room, will decide to order, or purchase, the book from their favorite book seller.

Erin read through my brochure with a well-tuned eye and came up with several corrections and suggestions that absolutely rendered it a far better marketing effort than it was when I deemed it perfect and ready for printing. She has a keen, literary eye on which I have relied since I started writing my novel on December 29th, 2012.

My daughter leads a very busy life, so her consistently kind contributions to my writing success mean the world to me. That is why, and for so very many other reasons, I celebrate Erin’s gift of editorial kindness that keeps on giving.

 

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:

Kindness Fridays

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Today’s kindness focuses on customer service – not at retail establishments but at medical offices. And I’ll be brief.

On May 17th of this year, I had a surgical consult for a nasty, invasive skin cancer that decided to make itself known on my right leg. On May 19th, I had surgery to remove that skin cancer.

I then had two subsequent post-surgical visits, May 25th and June 1st, with the latter being my final visit (knock on wood) at the Skin Surgery Center in Bellevue, Washington.

Right before I left I said good-bye to the front desk person, Ashley, and quite truthfully told her, “I’m going to miss you!”

Ashley made my cancer journey – and no doubt those of many of the center’s patients – one that felt less clinical, and more restorative. She always greeted me by my first name, recognizing me among so many that pass through the doors of the surgery center. She also remembered something important about my life – important to me anyway – and brought it up as I left.

“Enjoy your hiking this summer!”

Big deal, right? Yes, it was, because of all the things that bothered me about my cancer, it was not being able to hike that I bemoaned the most. Her farewell greeting put the biggest smile on my face because I was cleared to hit the trails once again, and she was celebrating my ability to do so.

 

 

Kindness Fridays

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Being kind is taking a stand. By itself, it might not help: maybe our kindness will be ineffective. The money we sent to alleviate hunger might be unwisely used. Helping an old lady cross the road does not eliminate poverty in a faraway country. And for every plastic bottle we pick up on the beach, another ten will be tossed down tomorrow.

Never mind. We have affirmed a principle, a way of being.

Microcosm is macrocosm: Each person is the whole world.

As many mystics and visionaries have pointed out, each individual, in some subtle and mysterious way, embodies all people.

If we can bring some relief and well-being to just one person’s life, this is already a victory, a silent, humble response to the suffering and pain of the planet.

This is the starting point.

Today’s Kindness Friday comes directly from the book, The Power of Kindness – The Unexpected Benefits of Leading a Compassionate Life, by Piero Ferrucci.

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.

Kindness Fridays

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For years now, I’ve practiced the habit of celebrating even the smallest of victories that come my way. The more aware I am of something that goes right, or of something that brings joy to my life, the more celebrations I get to enjoy.

Tuesday of this week saw me hustling and bustling around town getting various errands accomplished and even though my adrenaline was at a high level, I still could use some help. While at my local grocery store I purchased a Diet Pepsi in a screw bottle and got in my car to continue the remainder of my day’s tasks.

Except I couldn’t open the Pepsi bottle. After several valiant attempts to unscrew the top, I stopped just short of shredding the skin on the inside of my hand. I’m pretty sure the bottle top machine in the factory needs to be adjusted a bit so the consumer can enjoy their beverage right away instead of having to bulk up one’s upper body before attempting access.

Next stop was to fill up my Corolla with gas; that’s when I saw my opportunity. I approached a young man in the commercial truck behind me at the pump and asked if he could please unscrew the top of my Pepsi because, “that caffeine ain’t gonna get in my body any other way.” With a smile on his face, he gladly fulfilled my request which then put a smile on my face.

Kindness doesn’t have to be earth shattering to make a difference – it can be as simple as helping a caffeine-starved person get their fix.