Quality of Life

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 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.

Kindness Fridays

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Today’s installment combines two passions of mine: kindness and hiking.

Since my husband’s retirement in April of 2016, we’ve managed to hike every week except during the winter months. Now with the snow a distant memory on most of the Pacific Northwest trails, we’re well into this year’s hiking season.

On Tuesday of this week, we headed out to Barclay Lake located in the lower Stevens Pass area of western Washington. This was a new hike for me and one perfectly suited for a sprained right foot, mine, needing a bit of coddling while on its healing journey. The hike was just under 5 miles and only had an elevation gain of 500 feet.

About two miles into our hike and a half mile from the lake, a couple in their late 60s were making their descent and as I always do for every hiker we meet on the trail, I greeted the man and woman which then encouraged them to pause and spend some time with us. This couple hiked 30 times last year – to our 18 times – which seriously encouraged me to continue our hiking activities during the winter season, albeit on trails at lower elevations to avoid snow encounters along the way. The kindness extended was the mutual sharing of favorite hiking destinations: for us, it was Margaret Lake, for them, Bowen Bay.

My husband and I, geared up.

The excitement from each couple describing their particular trail favorite created a commonality of experience that went beyond any differences we may harbor within ourselves, be they political, religious, life experience, or otherwise. The four of us agreed that being out in nature and accomplishing our individual hiking goals contributed greatly to our quality of life.

On the trail, differences in beliefs or political leanings simply don’t come into play. And that, my friends, is a glorious way to experience kindness.

 

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.