I am not a writer, I happen to be a woman, mother, spouse, sister, grandmother, aunt, and a friend who has tried her hand at writing. I wrote a novel, Requiem for the Status Quo, to honor the father for whom I provided care when he had Alzheimer’s disease – a disease that took his life on October 13, 2007. I didn’t set out to be a novelist – arguably, I’m really not a novelist at all – but I knew it was imperative that I do something important for future Alzheimer’s caregivers and to use whichever vehicle was needed to accomplish that something. For me, it was writing a book.
Then what? What else could I possibly do to magnify the impact I set out to make regarding the disease that takes everyone it settles on, and forever changes the family members associated with its victims?
What I did was join AlzAuthors, a digital and community platform that uses the art of storytelling to light the way for those impacted by Alzheimer’s disease, to advance understanding of the disease, and to lift the silence and stigma of Alzheimer’s and other dementias. As a newly published author and a survivor of dementia caregiving, I was extraordinarily impressed – and still am – with the organization founded by three daughters of Alzheimer’s who sought a place of refuge and resources for their own caregiving journeys.
Then a funny thing happened – one of those founders asked me to join the management team of five, an invitation I gladly accepted, and with the guidance of a business consultant, who just happens to be my own daughter, AlzAuthors went from being a growing community of authors to a 501(c)(3) non-profit organization.
Then something else happened: although not serious, my health took a debilitating turn that now requires me to step back from my AlzAuthors responsibilities. Only the patient knows what she can handle, and what I know is that my focus needs to be on my health, as well as on the precious family that means so very much to me. I am still an AlzAuthor and I very much support AlzAuthors’ non-profit mission, but I will do so from a slightly removed distance.
Of this I am certain, and I quote Pico Iyer when I state:
In an age of acceleration, nothing can be more exhilarating than going slow.
In an age of distraction, nothing is so luxurious as paying attention.
In an age of constant movement, nothing is so urgent as sitting still.
I completed another novel with a message I feel is of great importance that I will publish later this year. Currently, however, I have more important matters on which to spend my time and energy.
Now is my time for sitting still – focusing on me, and focusing on my family. That is the latest chapter I am writing for my life, hoping to get it right, once and for all.
Twelve years ago today, my father died from complications of Alzheimer’s disease. That morning I had received a call from the memory care unit where Dad had lived for several years. The nursing manager of that unit said if I wanted to see my father again before he died, I should come as soon as possible. (I had spent a week with him the month before and knew that his prostate cancer would most likely hasten his death.) I first called my husband at work to let him know I would find a flight from Seattle, WA to Medford, OR and be gone…for how long? I didn’t know. Then while on the phone with my brother and sister, I booked my flight online with a tentative return, threw the very minimum of clothing in an overnight bag, and headed to SeaTac International Airport.
If you have read my novel, Requiem for the Status Quo, you’ve pretty much read the account of what transpired for me at my father’s bedside; some of the happenings that day/evening were altered, but the gist of what transpired are contained in Chapters 41 & 42.
Upon my return to Seattle, my energy level was depleted yet still on alert. When you have a loved one with a debilitating disease, a state of alertness is the norm – the status quo of constantly being in a state of emergency, if you will. You keep waiting for the phone to ring with the latest development – such as it did for the last time on October 13, 2007 – but that phone number’s appearance on my Caller ID had ceased.
What hadn’t ceased was the business of dying – all the financial and estate matters one cannot ignore – but because of my father’s diligence and organization leading up to his Alzheimer’s diagnosis, much of what I needed to do on behalf of his estate and us survivors, was readily dispatched in the months that followed my father’s death.
But the “now what?” of life post-caregiving was front and center for me. Initially, I wanted absolutely nothing to do with anything having to do with dementia. I continued to financially support my local Alzheimer’s Association and participated in one more Walk to End Alzheimer’s, but that was it. Then my heart called and I became an Alzheimer’s Association caregiver support group facilitator and shortly thereafter, I entered the world of long-term care advocacy by becoming a Washington State LTC ombudsman, both of which I did for five years.
Then my heart spoke to me again, this time it said, “How about writing about your experience as Dad’s caregiver?” I ignored that thought until I no longer could – it wouldn’t leave me alone! I dragged out all of Dad’s records and my numerous journals, sat at my dining table, and over many months’ time, outlined how I would honor my father’s journey and my family’s experience within the pages of a book that might benefit others.
That was five years after my father’s death. My book was published five years later.
Now twelve years after the end of my father’s Alzheimer’s journey,
my book still manages to make its way into the hands of those who need it.
If you, or someone you know, needs encouragement and a renewed sense of hope,
please make your way to your favorite bookstore, or find it right here.
Blessings to you today, and always.
Starting Friday, June 21st, the longest day of the year AND The Longest Day as celebrated in honor of those who have Alzheimer’s or other dementia or who have lost their lives to this always fatal disease, several AlzAuthors will be discounting their books so you will want to fill your shelves – virtual or otherwise – with several excellent sources of support.
These authors will generously discount their books for an entire week. Set your calendars so you don’t forget!
The link to these discounted books will be provided soon!
I’m a writer and a published author so when independent bookstores can thrive in this 21st century, Amazonian world, I enjoy celebrating with them. This local bookstore proves you can be small but still make a grand impression. I love this type of good news! And by the way, I recently published the 2nd edition of my novel, Requiem for the status quo, a book I wrote to honor my father’s Alzheimer’s journey. Yes, it’s available on Amazon, but it’s also available at the independent bookstore featured in this week’s edition of Good News!
Although my novel, based on my own caregiving experiences for my father, focuses on the challenges faced by those caring for someone with Alzheimer’s disease or other dementia, it also benefits Every Caregiver – that universal person who finds her or himself as the primary individual caring for a loved one with a debilitating illness.
My prayer is that Requiem for the status quo helps everyone struggling to balance their own needs with that of their loved one.
Patricia Constance Conroy Desonier: born on May 6th, 1917, she married my father on May 26th, 1947,
and died in her sleep on September 24, 1994.
My mother never complained about how much pain she experienced in her life. Diagnosed with rheumatoid arthritis as a teenager, she lived with this debilitating condition, staying as active as she wanted to be. When I was a young adult, I told Mom how much I respected her for her activity level, knowing each deformed joint in her body never let her forget the disease that got progressively worse as the years wore on. Mom’s response, “If I stay at home and do nothing, I’ll still hurt. I’d much rather be active, doing something I love, and hurt more.” Nothing stopped my mother – absolutely nothing. She took neighborhood walks; she golfed using special clubs with thickened grips; she made all our clothing; she painted the insides of each home I lived in and stripped and restored wood furniture that stayed with the family in various iterations throughout our lives.
Mom encouraged me to write from a very early age. As a four-year-old, she let me pound on her manual typewriter, typing gibberish but encouraging me to read my “stories” to the family at dinner time. My current soft activism can be attributed to both my parents, but especially to my mother. I say “soft” activism, not because I pull punches, but because I learned how to have an impact on others without offense, without judgment, and with a kindness that speaks far louder than words. Like my mother, I won’t stand for injustice; also like my mother, I won’t dish out unjust behavior just so my voice can be louder than the offending voice. I guess the phrase, “Kill ’em with kindness” is applicable in this respect. My mother killed many a person in that manner.
Mom didn’t miss out on seeing all of her grandchildren, including my daughter, Erin, above, but she did miss out on meeting my extraordinary husband, Jerry, and his two daughters, which she would have welcomed as her own granddaughters. Dad had the privilege of getting to know my husband and he met my additional two daughters, and for that, I am truly grateful. I honor Mom today – her birthday – and every day because she deserves the same honor and respect she bestowed on others, including my father with whom she was married for forty-seven years.
I love you Mom and am so pleased you live within me.