I discovered something shocking during the weeks that followed my novel’s release:
Alzheimer’s disease is still a secret.
I know; we’ve all certainly read about it, especially when a celebrity is diagnosed with the disease. Every once and awhile there might be an Alzheimer’s Association commercial on television…that is assuming we don’t fast forward through it or walk out of the room. Another reason we’re familiar with the disease is that it is happening to so many people with whom we are acquainted – whether intimately or tangentially.
But it’s still a secret. The very definition of the word speaks to its intent: adj. not known or seen or not meant to be known or seen by others; n. something not properly understood; a mystery. from the Concise Oxford English Dictionary
In many of my promotional posts and boasts for my novel Requiem for the status quo, I’ve indicated that my book tour would probably look more like a senior center tour than what is normally the route for authors: readings and signings in major and independent bookstores. That’s the tact I took, approaching numerous senior centers in Western Washington. 25% of those I approached booked my author event on their activity calendars. But when I approached a major senior housing community foundation to get on their speakers’ calendar, I was told the residents pushed back at the foundation’s previous efforts to enlighten and inform when they hosted those who spoke to the reality of Alzheimer’s disease and other dementia.
The definition of hopeless: 1) feeling or causing despair about something; 2) inadequate, incompetent.
When life happens, as it always does regardless of our preferences, we’re bound to find ourselves unable to manufacture even a modicum of hope to get us through the circumstances in which we find ourselves:
- The loss of a job and the financial repercussions resultant from that loss.
- Crimes against our body or our property.
- Relationship disruptions.
- The devastating diagnosis of a debilitating disease: cancer, ALS, Alzheimer’s disease.
Hope isn’t what a person feels when the rug has been yanked out from underneath them and their very existence as they knew it, maybe even just five minutes earlier, takes an irreversible turn.To be sure, that’s how quickly hope can take a nosedive. Equally as quick, we can not imagine we will ever feel happy again, nor can we imagine not being overwhelmed with how life has showed up. In an instant, our level of hope took a nosedive. Read the rest of this entry »
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.
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.
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.
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.