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.
Are you overwhelmed to the point that you say to yourself, What could I possibly do to make a difference?
The answer is:
You can make a difference because kindness trumps all.
I recently wrote Ellen Degeneres to thank her for her ongoing efforts to spread kindness. Sure, at the end of each of her daily shows she says, Be kind to one another, but she puts force behind those words in what she does for others. At the conclusion of my letter to her, I said the following:
We’re not charged with changing the entire world, but we can have an impact on the miniscule portion of the world to which we have access. You’re doing it, and I will continue to do what I can from my corner of the world. If everyone makes a fraction of a difference right from where they are, those fractions will add up to great things.
I’m glad I’m on the same kindness train as you, Ellen, and I’ll keep chugging along until I can’t chug any longer.
I sincerely believe that random acts or words of kindness can make a difference in the world in which we live. There are so many negative and hurtful words being thrust into our universe, can’t we just please try to balance out that hurt with words of encouragement, recognition, and nourishment?
Yes, nourishment. In all our daily interactions – be they via social media or in person – we can nurture the hurt that exists all around us. Our words, our smile, our actions may just change the life of someone forever. Haven’t you been on the receiving end of that type of transformative nourishment? Didn’t it feel good? Didn’t it fill the emptiness within you that hungered and thirsted for confirmation that you matter, that you aren’t a failure, that you have potential?
Let’s revisit how that felt and commit to quenching the thirst of each person with whom we come in contact.
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.
I’ve read numerous articles regarding what writers of fiction – or non-fiction for that matter – should write about:
- You should write about what you know
- Expand your horizons, write about what you don’t know and research the heck out of the subject matter
In my case, I did both: I wrote about what I knew very intimately – caring for someone with Alzheimer’s disease – and I performed a great deal of research to augment and supplement the personal knowledge I acquired over my father’s multi-year disease journey.
I enjoyed the research almost as equally as I enjoyed going through my personal journals and my father’s medical records that documented the progress of his fatal disease.
Perhaps “enjoy” isn’t exactly the most appropriate descriptor of the developmental process for my novel, REQUIEM FOR THE STATUS QUO. Perhaps the more appropriate descriptor is that I was fully engaged and committed to accurately tell every nuance of the story.
You see, the greater portion of the story was very personal to me and my family but it was also a story I knew was representative of so many in the world dealing with the same horrific disease onslaught. I took my story-telling responsibility of portraying the reality of the physical and emotional toll on caregiver and patient very seriously, but I also included humorous incidents that crop up from time to time when you least expect it … because as with all things in life, even during the darkest of times, humor can be found if we’re open to its sanity-saving presence.
And those of you in-the-know understand how important it is to nurture the fading remnants of sanity onto which you are holding.
REQUIEM FOR THE STATUS QUO, to be released by Black Rose Writing, July 2017
I met my husband on September 21st, 1996. In the 21 years since that first date, I guarantee my body/looks have changed – as would be expected.
And as is also expected – if you’re me – is you become self-conscious of parts of your body that don’t quite resemble the version from two decades ago. You avoid extensive interaction with a mirror when you step out of the shower, quickly covering up all the body bits that have betrayed you over the years.
Well, not betrayed, just relocated and representing themselves differently than before.
Guess what? My husband compliments me time and again, never pointing out the changes because quite frankly, he doesn’t see them. No, he’s not blind; when I say he doesn’t see them, I mean he doesn’t see them. He sees me, the woman he met in 1996, married in 2000, and who daily recommits himself to me for a lifetime. Love isn’t blind, it’s also not critical. Love is accepting.
That’s kindness with a capital K.
My local newspaper, the Seattle Times, has a daily mini-column titled, Rant and Rave. I always read that column, but I’m most interested in the Raves because acts of kindness are spotlighted. As you can see in the attached link, one portion of the column is affirming, the other, not so much.
I wrote to the editor of that particular section, asking him to put more focus on the Raves, maybe even excluding the Rants from time to time, because the general public has so many social media venues in which to complain. I haven’t heard back from him yet, but I am hopeful that I eventually will.
I sincerely believe we all have a responsibility to counter balance the negativity that surrounds us, and distributing kindnesses to others is one very easy way of doing so. The yucky things that go on in the world get all the attention; the spotlight shines brightly on those things; the good that occurs barely receives the dying flame from a match.
What can you do to make the world a better place?
Be kind to one another, all day, every day.