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 subject of dementia is not a popular one – trust me, I understand fully why that is the case. But it is a reality that is becoming more normal than not. Being forgetful in itself isn’t all that unusual as we age. There’s not a person reading this post who hasn’t misplaced their keys or walked into a room with good intentions only to forget why the heck he went there. That’s quite normal and not indicative of a diagnosis of Alzheimer’s or other dementia.
But the abnormal forgetting or fumbling for words that might be representative of a true cognitive disorder are becoming relatively common as more and more are diagnosed with dementia. Right around the middle of my father’s Alzheimer’s disease journey I was visiting him in his assisted living apartment and he suggested, “Why don’t we get in that box with numbered buttons on the wall that takes us down to the first floor and grab us some lunch, shall we?” I knew he meant the elevator but he wasn’t able to come up with the applicable word so he editorialized his intentions. That became our family’s normal and although we hated that our dear father, Don Patrick Desonier, had to use a multitude of words to describe one, that’s just the way it was. (By the way, my extraordinary father was the inspiration for one of Requiem’s primary characters, Patrick Quinn, and Patrick’s daughter, Colleen, may just have been modeled after this author.)
But I digress. All I want to do is share my story and spread the word by being a normal person who was the family caregiver for a most outstanding and generous man. I wanted, and still want, people to have someone to whom they can relate; someone who knew that the essence of a loved one still remained even to the very end, regardless of how much it changed him.
Fortunately, I have several bookstore author events scheduled in the months ahead, so I’ll still get the word out, albeit not in all the venues in which I had hoped.
Requiem for the status quo was released by Black Rose Writing on July 20th. You can order Requiem at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. Be sure to shop around for the best price, you won’t be sorry you did.