caregiving

Kindness Fridays

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This week’s kindness spotlights the Women’s Fiction Writers Association (WFWA) a fabulous group for writers of women’s fiction. Most if not all the administrative staff is volunteer – the reason why their kindness is this week’s selection. As a member of this organization, I was given the opportunity to have a podcast recorded for their Hear Me Roar program because I’m a debut author. Although my novel, Requiem for the status quo was released a year ago, it was my debut publishing effort.

This podcast is approximately 30 minutes in length, and although my novel is certainly the focus, much attention was spent on the prevalence of Alzheimer’s and other dementias in the world. Perhaps this podcast will keep you company on your commute in the next few days; although it may seem a bit choppy, I think it’s worth hanging in there to hear my, and the host’s, provocative discussion.

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Dynamite storybook for seniors with dementia

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I was asked to write a story or two for an anthology of short, short, stories that would be read to seniors with cognitive impairment. I jumped at the opportunity. That anthology, The Mighty Ant, is now available in paperback on Amazon.

I am one of 33 contributors to this collection of short stories for seniors who suffer from dementia and other related memory or cognitive disorders. This book is the culmination of a project from editor and contributor, Jessica Bryan, who is a caregiver and advocate for caregivers. Several years ago she began to notice that her mother, who suffers from Alzheimer’s disease, lost focus and could no longer read lengthy books. Jessica began reading to her mother and found that simple, short stories were easier for her to understand. The Mighty Ant is filled with these kinds of fiction and non-fiction stories.

The proceeds from the sales of the books will be donated to a local Council on Aging. The generous contributions of authors like myself have come from all over the world. The result is a book with different perspectives, reminiscences, and tales that reflect not only local culture, but a variety of customs, ethnicities, and lifestyles.

I am honored to have my two stories titled, A Neighborly Friendship and A Sweetheart of a Story included in this collection. A Sweetheart of a Story was selected as the final story in the book because the editor felt it was the perfect selection to provide a sweet ending to the anthology. Buy a copy or ten or more for yourself and others…perhaps your local memory care community would love to include the reading of this book to their senior activity schedule! Currently only $12 for this 322-page large print storybook.

 

The secret of Alzheimer’s disease

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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.

Damn. Read the rest of this entry »

Reader discoveries

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To celebrate my novel’s release, I held a giveaway on a Facebook readers group, A Novel Bee, and made some extraordinary reader discoveries.

I gave the members of that group 24 hours to leave a comment on my giveaway announcement if they wanted to be entered into my contest to pick one lucky (hopefully lucky) reader to receive a complimentary copy of my novel, Requiem for the status quo.

I received 37 entries, and a considerable percentage of those readers’ entries made mention of their own personal Alzheimer’s/dementia caregiving journey. Here are just a few of those comments:

  • I am a geriatric care manager, can’t wait to read it!
  • My friend just had to put her mom into a caregiving rest home because she could no longer handle her. She was becoming quite violent. It is a horrendous disease.
  • I love that you are writing inspiring stories! Many of us are or were caregivers and the hopelessness we feel when we dont see them getting better can be overwhelming. Your compassion is so sweet and much needed in todays world. Im really excited to find a new author I can enjoy!
  • I would be honored to read this book, my father had Alzheimer’s disease. I want to tell you that the cover is totally amazing !!!!!
  • I would love to win. My husband has Alzheimer’s/ dementia so it is if special interest to me.

Even as familiar as I am with the statistics for this disease – 44 million diagnosed worldwide as of this writing – it still astounds me to hear the personal stories associated with it. Like every terminal disease known to man, Alzheimer’s and other dementia are very personal diseases. The brain – the very essence of a person’s being – is the initial body part affected. What we say, how we behave, and who we are resides in the various, vital parts of our brain. Our brain is the grand traffic director of all things me.

It’s no wonder the very long goodbye associated with this disease is so devastating to the one diagnosed, as well as for the one caring for her or him. It’s very personal, isn’t it?

I am of the belief that family dementia caregivers are 21st century heroes. Additionally, all caregivers, not just those on a dementia caregiving journey are the best of the best. They are:

Ordinary people, doing the ordinary right thing, at an extraordinary time.

I am honored to be in your company.

Requiem for the status quo will be 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. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.

 

My Alzheimer’s family caregiving journey

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My dad, circa 1980s

I had the privilege of being my father’s caregiver during his multi-year struggle with Alzheimer’s disease that ended with his death in 2007. Five years after his death, I started writing my debut novel, Requiem for the status quo, to be released by an independent publisher, Black Rose Writing, on July 20th. And now five years since I started my novel, Requiem will be available to everyone in less than 30 days. My debut novel was inspired by my father’s and my caregiving journey and is dedicated to the man whose later years was robbed by a disease that is always fatal. The book’s dedication reads: Dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve.

I am in the very distinct and healthy position of understanding that realistically, as a debut author I cannot hope to be an instant and resounding financial success. But that’s okay, because for me it has never been about the money, but very much about helping those who are experiencing or have experienced an Alzheimer’s caregiving journey similar to mine. For that reason, most of my “book tour” will encompass senior centers in the region, as well as senior living residential communities where I hope to hold readings and sell my novel to seniors at a highly-discounted price. I know it is said that when trying to fill an auditorium, it’s all about getting butts in seats, but for me, it’s about getting books into laps.

And that’s what I’m going to do.

Requiem for the status quo is currently available for preorder at Black Rose Writing, enter discount code PREORDER2017 before July 20th for a 10% discount. You can also preorder Requiem at Barnes & Noble right now, and Amazon will be providing preorder opportunities in the days ahead. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.

 

Caregiving and the Super Bowl

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Heart in handsThis is NOT an article about football.  Anyone who has a loved one for whom they provide care – whether hands-on or peripheral – knows all too well how unpredictable life can be with that 24/7 responsibility.  We’d all like to think that special occasions and events are immune from medical emergencies and other disasters, but all too often that is not the case.

Welcome to the life of a caregiver.

I honestly didn’t think I had another football article in me but the unfortunate circumstances in my best friend’s life have proven otherwise.  Read the rest of this entry »

Do you believe in magic?

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Horoscope chartMy December 29, 2012 Horoscope:

Today is a 7.  Now’s perfect to start a new writing project; no need to wait until next year.  Put down your thoughts without worrying about form, one word at a time.

Prior to 12/29/2012 I would have stood by my belief that Horoscopes are merely faulty predictions by faulty people provided to those of us who are humored by such baseless declarations of personalized present and future outcomes.

But that personalized declaration for Irene on a day in late December 2012 was right on the money.

Computer stationThe backstory: During the summer of 2012 I made the decision to write a novel that focuses on the lives of caregivers of loved ones with Alzheimer’s and other dementia.  The focus would be split with equal attention spent on the person with the disease.  My book’s mission: to put a personal face on those every day people (that’s you and me) thrust onto the memory-removing disease journey.  Once I made the decision to write a book, I set January 1, 2013 as the start date for my project.

That start date was moved up based on the extremely accurate Horoscope (see above) for this wannabe author whose birthday fell under the sign of the bull: Taurus.

I obeyed the directive and sat at my computer that very day and managed to write page after page of content.  Wow!  I’m writing a novel!  It was quite exhilarating being able to spew page after page of fictional story line based on experiences I had with my father, my sister-in-law, and the many people with whom I became acquainted during my years of work with vulnerable adults.

I finished the “final” version of my manuscript earlier this month and set the timeline for next steps: starting January 1, 2015 I will actively seek representation for my novel.  Oddly enough, that seems to jive with today’s Horoscope (2 years after the first timely Horoscope) if you force a few of the jigsaw puzzle pieces to fit what’s currently going on in my life.

My December 29, 2014 Horoscope:

Today is a 6.  Hide away somewhere peaceful and you can get some productive thinking in.  Inspire intuitive leaps.  Creative work pays well now.  Don’t squander an enticing opportunity.  Meditate on it, and your choice comes to you.  Nurture your physical health with exercise, good food and rest.

Glass Now TAMI guess I may as well get to it based on previous personal declarations that brought me to this stage of my writing career.  Seriously, why wait when I can do it now?

If you’re interested in how this all pans out for me, I hope you’ll Follow my blog for updates.  If you’re already a Follower, stay tuned for more predictions and/or fabulous outcomes.