Alzheimer’s and other dementia
Wow! Talk about making lemonade out of lemons! Joe Bahr suffered the loss of his brother, Marty, to Alzheimer’s disease. Joe and Marty made a deal before Marty passed on. Check out here what that deal entailed. What a legacy Marty left for the rest of us!
This week’s Good News story focuses on a commercial venture that offers a highly-discounted Caribbean cruise for Alzheimer’s patients and caregivers. (This is not a commercial for the cruise, rather, it’s a celebration of efforts to lighten the load of those on the dementia path that currently is approaching more than 50 million worldwide.) If you have ever traveled with someone with cognitive impairment, you know first-hand how difficult it can be to keep that someone engaged in activities that meet the impaired person’s needs. I am familiar with family members who have lost their loved one in an airport because of the unpredictability of a person’s behavior. Several years ago I flew in an airplane from Washington’s Dulles International airport to Seattle, seated two rows behind a woman who, quite frankly, should not have been traveling by herself, a person who could not sit still in her airplane seat, roaming down the middle aisle in an attempt to leave the airplane. As stressful as that was for the passengers, that stress doesn’t come close to the anxiety and stress experienced by the traveler who had no understanding of where she was, and no understanding of why she couldn’t simply leave the confines of the tubular travel vehicle. Alzheimer’s “exit-seeking behavior” at 35,000 feet is my October 2012 post that describes this harrowing experience.
But here’s the good news, the above Caribbean cruise – scheduled for April 2019 – is geared to the needs of both the person with dementia and her or his friendly caregiver. The staff and crew are trained to provide an optimal experience for one and all. Times of respite will be offered for the weary caregiver and adult day activities will be offered in abundance for the passenger with early-stage Alzheimer’s or similar dementia.
Now, if that isn’t good news, I don’t know what is.
November is National Caregiver Appreciation Month, a time to recognize the long hours, sacrifice, and love all caregivers bring to the task of caring for a loved one with dementia or any long-term illness. In honor of their efforts, AlzAuthors is hosting an eBook sale and giveaway! This is a terrific way for caregivers who are looking for knowledge, guidance, and support to find carefully vetted books to help guide and inspire them every day.care
Consider this information from the Alzheimer’s Association:
- In 2016, 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer’s and other dementias, a contribution to the nation valued at $230.1 billion.
- Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older.
- 41 percent of caregivers have a household income of $50,000 or less.
- Approximately one-quarter of dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent, but also for children under age 18.
Starting today through November 21st, you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from free to $2.99. We offer a variety of genres, including fiction, memoir, non-fiction, and children’s literature. Many of our books are also available in paperback and audio, so be sure to check them out too. As a matter of fact, my novel is available on Kindle for just $2.99 through November 21st and if you prefer a paperback copy, my publisher is offering it at half price on my publisher’s site. Check it outhere!
Today is release day for my debut novel.
On December 29, 2012, I first sat down to write that novel.
On the day of the fifth anniversary of my father’s October 13, 2007 death, I decided to write a novel inspired by my caregiving experiences as his Alzheimer’s care manager. I was certain novel writing would be a huge undertaking because up to that point, I had never written fiction. Because of the enormity of said project, I figured I would wait until the beginning of the following year – you know, a fresh start and all.
But the universe had other plans. My December 29, 2012 horoscope was what the universe used as the catalyst to get my attention. More than that, it shocked me into action. The horoscope so alarmed me, I cut it out of the newspaper, typed it out in large font, and after writing my novel’s very first page, I framed all three to memorialize the outstanding coincidence of what my Taurus-scope said. Here, for your enlightenment, is its wording:
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.
I showed the horoscope to my husband and if it at all possible, he was more shocked than I at the horoscope’s content. He left me alone the remainder of the day, knowing the horoscope meant business, and so did I. I closed the door to my office, sat at my computer and started typing.
I didn’t know what I was doing. As I mentioned earlier, I had never written fiction. At that point, my personal blog, Living: the ultimate team sport was filled with 100s of non-fiction pieces, most of which centered around aging, long-term care, as well as numerous posts about Alzheimer’s disease, other dementia, and the caregiving struggles faced by families. But to write prose – with dialogue!!!!! – was beyond my skill set, and remained to be for quite some time.
The short of the long of it is that Requiem for the status quo was not the first title for the novel, there were many, the first being Have we met? Aren’t you glad I changed it to its current one? Not only were several titles tried on but my magnum opus went through many rewrites, most notably and importantly, the first draft contained a whopping total of 140,000 words. You see, I had a lot to say and I just kept typing until I had nothing more to add.
That’s an excellent way to get thoughts down on paper, but the first draft is by no means the final product that is pitched to agents and publishers. My now published novel is less than 68,000 words. Yes, lots of cutting and slashing took place over the years, to the point where not only am I proud of the finished product, but a publisher is also proud of it, Black Rose Writing.
I will close this post by providing glimpses of my father to you over the years. I hope you enjoy this montage that includes, from top left: My mother and father’s wedding day, 1947; my wedding day 2000 (my favorite photo of my dad and I); and the Desonier family circa 1971.
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.
I’ve mentioned in previous posts that my “book tour” may look more like a senior center tour than a literary one. The reason: I want to reach those who could use a bit of what I have to offer. As my Author Bio states, I want to make a difference in the lives of others by writing novels that encourage those who just might need another cheerleader in their corner. At the bottom of each of my site’s pages is a section titled READERS CORNER. Each week I provide a new element of encouragement as my simple way of standing in my readers’ corner.
Yesterday I witnessed one small way in which someone was reached by my novel.
I had a haircut appointment with my wonderful stylist, Molly, of C.J. Salon. Molly has followed my entire publishing journey and is very familiar with the topic of my soon to be published novel, Requiem for the status quo. She finished up with her previous client and welcomed me into her chair. I did the reveal of my published novel which I had brought with me for a much anticipated Show and Tell moment. I also gave her several copies of my marketing brochure that provides a peek into the storyline and the lives of the characters. “Please hand them out to women who could possibly benefit from reading my novel.”
She grabbed one of the brochures, said, “I’ll be right back” and ran out into the parking lot to flag down her previous client. Turns out this client is fully-involved in a family member’s dementia journey and Molly felt she could benefit from reading my book. Turns out she was right. Her client was so excited, she hugged Molly and basically said, “This is what I’ve been looking for!”
That, my friends, was the highlight of my week – someone who wanted what I had to offer and just might benefit from the read. But you wanna know something else? My appointment was initially scheduled for 3 pm. The day before I found out I had a change of plans for my Friday, freeing up my morning, so I called C.J. Salon, asked if they had an earlier opening, and I grabbed it.
Molly’s client benefited from my change of plans – a change that initially was upsetting to me, but turned out to be just what was supposed to happen.
My oh my, I love how the Universe cooperates when its occupants are just going about their lives, oblivious to its whiles!
In less than two weeks, Requiem for the status quo will be released. It 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 and Amazon. 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.
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.