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:
- The tethered caregiver
- Helping an Alzheimer’s caregiver
- Caregiving and the 36-hour day
- A normal day, caregiving style
- Caregiving: grief, guilt, exhaustion, and discrimination
- Long distance caregiving Part I and Part II
- Caregiver: put on your oxygen mask first
- Caregivers, learning from our mistakes and finally
- But how am I supposed to do that?
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 Christine, nor 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.
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.
Last night, just as we were falling asleep, my husband drowsily remembered a conversation he had earlier in the day.
“Oh,” he murmured, “I talked to that guy from the committee.”
“Which guy?” I asked.
“You know… That guy… He wears a limp.”
My husband was only semi-conscious and that probably explains his weird phrasing.
But I kind of liked it.
The man wears a limp.
A limp as something you wear.
Think about the control that gives the man over his limp.
He owns that limp. It doesn’t own him.
It makes me want to think about other conditions that we experience as something we wear. How differently we might consider our issues, problems – our very bodies – if they are just Something We Wear.
We could wear our health:
“She wears some arthritis in her fingers.”
“She’s wearing her third pregnancy.”
“She wears a stroke on…
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My sister, Mary Riesche, has gone out of her way to follow all of my social media posts – including those relating to my upcoming book publication, Requiem for the Status Quo, which will be published by Black Rose Writing the third week of July.
You might be saying, “Yeah, who cares? What would you expect of a family member – and besides, social media is so easy to follow!”
My sister, an artist in her own right, is one of the most creative people I know. Her entire life has been spent developing her craft and that dedication has paid off with gallery showings in California wherein she earned various juried awards.
But my beautiful sister isn’t a computer-oriented person. This is not news to anyone who knows her, and it’s not news to Mary. But she has gone out of her way to support my publication efforts by boosting my posts and bragging about me to others through those boosts. Mary never goes onto an actual desktop or laptop computer, she only uses her smartphone, and most of her “writing” is via voice control, not typing.
It means so much to me that my sister extends the love she has for me through her social media kindness – regardless of how cumbersome it sometimes is for her. Her acts of kindness warm my heart and make me feel like a valid, almost-published author.
It’s a darn good feeling. Thank you, Mary.
We all have a strong preference that life should be easy, comfortable, and pain-free, but that doesn’t mean there’s something wrong with life when it isn’t those things. It’s just life and it’s not how you would prefer it to be, but that doesn’t mean there’s something wrong with it. – Constance Waverly, WaverlyRadio podcast #132
I imagine we all would prefer to live a life of health, happiness, and success (however success may be defined but certainly not limited to financial prosperity). With those three preferences met, life would be a carefree and joyful experience. Given the complexities of life, however, we are guaranteed a certain degree of physical pain, emotional heartache, want, and for some, absolute devastation.
Even an innocent newborn baby immediately discovers that his existence on this earth is anything but 100% delightful. He can’t define what that means when he’s a minute old, but he certainly feels it.
We tend to wonder why good things “always” seem to happen to bad people – an inaccurate thought, nevertheless it’s one that we entertain from time to time – but those of us who endeavor to do no harm aren’t blessed with easy, comfortable, and pain-free lives.
I don’t have the answer to that question but I do have an answer: our assumptions about others are just make believe because we have no way of knowing what is actually going on in their lives. A person’s outward show of perfection, boundless happiness, and ease is just that: their outward public mask that very well may hide an entirely different one worn in private. Let’s face it, no one can be ecstatically happy and fulfilled 365 days of the year – or even 24 hours a day, or dare I say, a mere 60 seconds at a time – so why is it that we assume others have mastered that very impossibility?
Part of what I’ve learned in my sixty-plus years is that what matters most is how we live in the present, regardless of whether or not that present pleases us. Living in the moment, accepting that moment as our life’s current state of being without pushing back against it can be far more fruitful and enjoyable than the alternative: anger, complaints, and hatred. For example, Ariel and Shya Kane, in their book Practical Enlightenment, point out very clearly that getting angry does nothing toward changing ones current situation. Case in point: you’re running late for work in disastrous traffic. You pound the steering wheel, honk your horn, and yell at the other commuters and what do you know? Your situation hasn’t changed but you’ve become your own worst enemy because your previous misery has been considerably compounded by your fruitless actions.
- Traffic doesn’t happen to us, it just happens.
- A rent increase wasn’t directed at us personally, it was simply a business decision made by the landlord.
- Long lines in the grocery store didn’t occur to inconvenience us; quite simply, like us, other people decided to shop at the same time.
- Coming down with the flu a day after a person arrives in Hawaii for the vacation of a lifetime wasn’t preventable; germs are everywhere and will do their thing at any time and any place. Even though it sucks that the germs manifested themselves just as the vacationer was heading to the beach, please know he’s not being punished for trying to have a good time.
All the wishing in the world won’t change our current reality because anything we could have done in the past is over and done with. Anything we could possibly do in the future hasn’t yet happened, so we should give it up and just be where and when we are right now.
Piero Ferrucci had this to say about the illusion of being in control when his preferences weren’t met during a vital point in his life:
The outside world did not adapt to me: More simply and practically, it is I who must adapt to what is happening moment to moment. The Power of Kindness.
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.