Alzheimer’s/Dementia

Community discussion on Alzheimer’s disease

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Saturday, August 26th, 3 pm

I am excited about my next author event which will take place at Book Tree in Kirkland, Washington.

Book Tree is a fabulous, quaint, neighborhood bookstore that truly excels at bringing the community together.

Here’s the content of their website’s About section:

BookTree is a vibrant gathering place for the exchange of ideas, and discussion of books and the literary arts.  It is a place where all are welcome to continue their journey, expand their knowledge, feed their interests and further their education through books and literature.  It is a place for families to find and enjoy the best of current literature.  A place where our customers can hear local and traveling writers, authors and poets present their work.

BookTree is one of the few remaining independent bookstores on the Eastside that will be an important part of our city’s identity.   It will be successful because of the generous support of our community who values a stand-alone retail bookstore.

BookTree is owned by 2 people who are passionate about the inherent value of books, reading, writing, listening and sharing diverse ideas, and viewpoints.

I hope to see you on the 26th!

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 »

Requiem characters’ radio interview

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Craig Boyack, author and author supporter – yes, author supporter – conducted a radio interview of two of the characters from my debut novel, Requiem for the status quo.

Patrick Quinn, father of the protagonist, Colleen Strand, has recently been diagnosed with Alzheimer’s disease and he’s having a difficult time trying to figure out how not to be a burden to his daughter, Colleen. He’s friendly with the radio host, even joking about a part of the male body that withers and needs medicinal support and encouragement from time to time. (Don’t worry, it’s G-Rated, you have to read the context of the interview to fully appreciate the sense of humor this fine, eighty-four year old man exhibits, even in the midst of his disease journey.)

Jonathan Quinn, Patrick’s son, who’s not too keen on what has happened to the father whom he at one time looked up to. Yes, Jonathan is embarrassed by his father’s forgetfulness and seems to think his father’s challenges are all about him, Jonathan, instead of the person who has a front row seat to every twist and turn the plaques and tangles of his diseased brain takes. Jonathan is firmly implanted on the road to denial and sadly, it gets in the way of his relationship with his father.

The interviewer is a fictional character, Lisa Burton, a character in one of Craig Boyak’s novels. The interview takes place on her show, Lisa Burton Radio. This different way of interviewing an author, in this case, me, and spotlighting the author’s novel, is so ingenious, you will be taken aback by how effective Craig’s blogging methods are.

Please, read the interview, and when you’ve done so, I hope you’ll purchase my book from any of the many online and brick and mortar book stores out there, including  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 also be available at most online book retailers on, or about, July 27th.

 

 

Dementia caregivers: 21st century heroes

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Those family members who have had, or who currently have, a family member or close friend with Alzheimer’s or other dementia, you are my hero.

You took on the task of showing your love and compassion by signing up to become a family caregiver which at its best is a learn-as-you-go, long-term commitment. Your efforts make a difference in the life of your loved one. They may not be able to express their appreciation for all that you do, but please know that the essence of who they are acknowledges your kindness.

Your name and/or identity may be lost to them, but you are still a vital part of their lives, and your friendly and loving demeanor goes far toward affirming them and making them feel valued and loved.

Thank you for all that you have done, continue to do, and will remain doing in the future. It is an honor to be in your company.

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

Release day for Requiem for the status quo

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Today is release day for my debut novel.

My horoscope that day

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.

Author Celebration: Books about Alzheimer’s disease

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To celebrate my own book’s July 20th release, a book that’s about Alzheimer’s disease and other dementia, I am tooting the horn of other authors who have done the same, a few of whom I know personally.

There’s a high degree of sadness surrounding this list because almost without fail, those authors who have written memoirs, story collections, fiction, and non-fiction books have done so because of their own personal Alzheimer’s journey.

Ann Hedreen, Her Beautiful Brain – A Memoir. Ann lives in Seattle, Washington, and has provided valuable support to me through my own publication journey. To quote Amazon.com:

Her Beautiful Brain is Ann Hedreen’s story of what it was like to become a mom just as her beautiful, brainy mother began to lose her mind to an unforgiving disease.

I can not imagine the struggle Ann endured while being a new mother whose time and energy was already spread so thin when life happened to her and her household, in a manner hardly believable to so many of us.

Collin Tong, Seattle journalist, Into the Storm – Journeys with Alzheimer’s, a compilation of true stories that starts with the very personal story of Collin’s caregiving journey with his wife, Linda. Collin’s support of my project, telling me not to give up when so many agents and publishers wouldn’t give me the time of day, inspired me to keep on keepin’ on. His story collection is amazing. Again, quoting Amazon:

In his compelling new anthology, Into the Storm: Journeys with Alzheimer’s, twenty-three writers, journalists, educators, health practitioners, social workers, clergy and other family caregivers from across the United States share their intimate stories of caring for loved ones with Alzheimer’s disease and dementia.

Each of the twenty-three stories are gems that you do not want to miss. I know you will be as impressed as I was by each and every one of them.

The next entry contains numerous authors and their books, found in one central location: AlzAuthors. The purpose for their site states:

We are AlzAuthors. In some way, each of us who have come together on this site have been affected by Alzheimer’s Disease/dementia. We share our experiences to bring knowledge, comfort, and understanding to others on this journey.

Click on this link to the AlzAuthors Bookstore to discover a wealth of informational and engaging books that will meet the needs of those who are caring for parents or grandparents, spouses or partners, those living with Alzheimer’s and dementia, fiction books, books for children and teens, and those offerings that provide helpful information for one and all.

3rd Act Magazine, not a book, but a publication addressing the third act of one’s life, usually heavy on those of us who are Baby Boomers. This publication has so much to offer its readers. I, for one, am pleased that the subtitle of their magazine reads, Aging with Confidence. You got that right! You’re not done with us yet; we have so much to offer the world that is spread out before us.

And yes, all of the above-mentioned projects prove that a lifetime of experience – the good and the not so terribly good – equates to having something to say, and not being afraid to say it. Which brings me to my part in that effort:

Requiem for the status quo is currently available at just about any bookstore you can walk into or find online. If a particular store doesn’t currently stock my novel, simply request that they order one for you and you should be able to get your hands on it in short order. You can order 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. Additionally, would you like your local library to carry my novel? Simply ask them; quite often they are quite willing to accommodate individual requests.

Requiem for the status quo is dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve.

I love you Dad.

 

 

 

 

The brutality of loss

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Sheryl Sandberg, COO of Facebook and author of the book, Option B, speaks of the brutality of sudden loss, something with which she is very well-acquainted. Requiem for the status quo speaks of the equally as brutal protracted loss of someone suffering from Alzheimer’s or other dementia. I’m not interested in comparing the two because those of us who have suffered a life-changing loss have no reason to compete with each other.

Caregivers for a loved one with dementia witness the gradual loss of someone they love over an extended period of time.

Once my father was diagnosed with Alzheimer’s disease, it took four years for him to leave me. I was devastated the moment he took his last breath, but my heart was continuously ripped apart during the years leading up to that final breath.

48 months, 208 weeks, 1460 days, 35,040 hours, and 2,102,400 minutes of ongoing departures from my and his life.

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