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Connection through stories

Stories can help us see no stranger. – Valarie Kaur

I recently listened to a TED talk wherein Valarie Kaur spoke of 3 Lessons of Revolutionary Love in a Time of Rage. She challenged me to find a connection in each face I meet along the way.

Five years after my father’s death from Alzheimer’s disease, I decided to share my family’s story so that others might find comfort in the commonality that exists from our shared stories. To be sure, with just under 6 million people in the United States diagnosed with the disease – and multitudes more globally – most of the world’s population has Alzheimer’s disease in common.

We don’t feel better that someone else has experienced or is experiencing this dreaded always-fatal disease, but we do find comfort in the fact that we are not alone. We can acknowledge that many walked this same path and came out on the other side; our active struggle will eventually come to an end.

After my father’s death in 2007, I was saturated in grief and happy to walk away from observing my father’s heart-rending decline. While gasping for breath through my tears, I also experienced a Phew! I’m glad that chapter of my life is over! 

Not so fast.

Not only was that chapter not over, but forty-four additional chapters begged to be written. And so I jumped back into the world of dementia because my journey had not ended – it had merely changed its direction. As I mentioned in an earlier post, My extraordinary success as an author, within months of publishing my first novel, Requiem for the status quo, I was able to celebrate the fact that others benefited from my work of love; people saw their story in mine and dared to hope they too would become a caregiver survivor, as did I.

In the twelve years since my father’s death, I can’t meet someone without Alzheimer’s disease or other dementia becoming front and center because Alzheimer’s is everywhere. I absolutely hate that so many of us have that story in common, but I am glad that we can connect with each other within the commonality of our shared experiences.

 

Alzheimer’s: it’s everywhere

There is never a time I mention the word, Alzheimer’s, where the person I am speaking with doesn’t say, “Oh, my (fill in the blank) had/has Alzheimer’s disease.” The most recent occurrence for me was yesterday.

I was lying on a medical procedure table awaiting anesthesia – light, conscious anesthesia. I was asked about my career; I said I was retired but that I was a published author so retirement wasn’t really applicable to me.

“What’s your book about?” I gave a brief book blurb about Requiem for the status quo, indicating that my novel was my creative treatment of my real-life experience as my father’s caregiver after he was diagnosed with Alzheimer’s disease.”

The anesthesia was administered but the conversation continued unabated as the doctor told me about the fate that befell his mother.  The entire procedure suite joined in the conversation, all of us bemoaning the fact that there was yet a cure and – most likely – that such a cure would probably not be realized in our lifetimes. We aren’t being fatalistic in our assessment but without any proof to the contrary, it’s difficult to be optimistic, isn’t it?

But I am hopeful. How about you?

Link to Amazon book

 

Six engaging books about Alzheimer’s disease

AlzAuthors is a community of more than 200 extraordinary authors who have written about Alzheimer’s disease and other dementia. Today I am spotlighting those books written by the community’s supportive management team, of which I am a member. Please take time to visit the six books spotlighted below. I truly believe you will be glad you did. Let AlzAuthors light your way through Alzheimer’s and dementia.

Alzheimer’s Daughter – a memoir by Jean Lee. A poignant accounting of a family’s life after both parents were diagnosed with Alzheimer’s disease on the same day.

Blue Hydrangeas – an Alzheimer’s love story by Marianne Sciucco. A touching account of a couple’s journey into Alzheimer’s and of the love that never succumbed to the disease.

Somebody Stole My Iron: A Family Memoir of Dementia by Vicki Tapia. This engaging memoir offers useful information from experts within the field of Alzheimer’s research, personal lessons the author learned along the way, and ideas and tips for managing the day-to-day ups and downs of dementia.

Weeds in Nana’s Garden by Kathryn Harrison. A heartfelt story of love that helps explain Alzheimer’s disease and other dementias geared toward the children in our lives.

Motherhood: Lost and Found – a memoir by Ann Campanella. A memoir of the ordinary and extraordinary courage of those who endure debilitating and even crushing illness, and those who suffer with them when they do so.

Requiem for the Status Quo by Irene Frances Olson. A novel that explores the delicate balance of families upended by Alzheimer’s disease and how they manage their loved one’s needs with their own.

Women’s Alzheimer’s Movement (WAM)

Who would have thought when I started my publishing journey to honor my father’s life – a life that was cut short because of the scourge of Alzheimer’s disease – I would one day be featured as part of Maria Shriver’s efforts to combat Alzheimer’s disease in women? But I am!

The Mission of Women’s Alzheimer’s Movement (WAM): Every 65 seconds, a new brain develops Alzheimer’s. Two-thirds of the brains with Alzheimer’s belong to women, and no one knows why that is. The Women’s Alzheimer’s Movement is determined to find out. Founded by Maria Shriver, The Women’s Alzheimer’s Movement is a nonprofit organization that is dedicated to raising awareness about women’s increased risk for Alzheimer’s and to educating the public — women and men — about lifestyle changes they can make to protect their brain health. Through our annual campaigns and initiatives, we also raise dollars to fund women-based Alzheimer’s research at leading scientific institutions, so that we can better understand this mind-blowing disease and hopefully get closer to a cure.

My contribution, Where the Rubber Meets the Road: Personal Caregiving, is a transparent look at the challenges every dementia caregiver faces, even for a personal caregiver who had years of professional memory care experience, as did I. If you know of someone who could use some encouragement – whether they are caring for someone with dementia or another debilitating illness – I hope you will share my Women’s Alzheimer’s Movement piece with them; doing so would honor my father, and all those current and future caregivers who just might need some additional support in their corner.

Fiction meets real life

When I made the decision to write about my caregiving experiences for my father, the first genre I thought of was fiction. To be sure, there are far more memoirs written about an individual’s family caregiving experiences than novels, but I chose what arguably, at least from a genre perspective, might be the most difficult.

It really doesn’t make sense that I chose fiction because up until the point I put fingers to keyboard and typed Chapter One of Requiem for the status quo, 100% of my writing over the years had been non-fiction. Ack! What did I think I was doing, taking on a genre about which I knew nothing?

What I was doing – wonderful readers of this post – was jumping into the deep end to honor my father and help others. Plain and simple, that sums up my efforts.

Now I’ve jumped into the deep end again, this time re-releasing my paperback through my publishing arm, Words Matter Press. My eBook is still available through Amazon via my original publisher, but the paperback version is now mine-all-mine. Please purchase the eBook, I mean, it’s only $4.99 or free to Kindle Unlimited subscribers, but if you’re looking to get your hands on the paperback version, I will be releasing that 2nd edition at some point this spring. I feel certain you will benefit from what you find within my novel’s pages.

Dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve. I love you, Dad.

Gone, but NEVER forgotten

They are not dead who live in lives they leave behind. In those whom they have blessed, they live again. – Maya Angelou

My father was born March 12, 1918. He died on October 13, 2007.

I like to believe I honor Dad with the way I live and what I’ve done with my life. One of those honoring aspects was writing my novel, Requiem for the status quo, a book that with literary license chronicles my caregiving days after my father was diagnosed with Alzheimer’s disease.

Don Patrick Desonier is a legend in my eyes, and I know I can say the same for those of my siblings, and the many people who knew him well. He left this earth more than twelve years ago, but he will never be forgotten.

Requiem for the status quo discounted!

The eBook and audiobook of Requiem for the status quo will continue to be available on Amazon until the end of 2019. I am going to self-publish the paperback version through my publishing arm Words Matter Press so as of March 1, 2019, you will not be able to purchase a paperback copy for your bookshelf until Words Matter Press’s Spring 2019 release on Amazon.

In the meantime, the Amazon paperback price for the month of February has been reduced so those who want to add this book to their library can do so at a discounted price before supplies run out. If you are a Prime member, shipping is FREE! 

Let these recent reviews encourage you to get your copy today!

Patty H. Good book! Such a heartbreaking topic but the story was told in a way that you hope it will help families that have been through it or are going through it knowing there is support out there and you don’t have to be alone. While I have not personally experienced Alzheimer’s, it made me think of my parents and their own struggles with aging and the feelings of frustration I had because I couldn’t make it stop. This is a strong, compassionate story and I would recommend it to any reader for support and know you aren’t alone. Thanks, for sharing your story.

Ilya B. Requiem for the Status Quo is a compelling novel with believable characters, fluid story, and intelligent writing. Some of the passages are sad, others are funny, still others quite poignant, and all too human. I particularly enjoyed Colleen’s ability to make the right choices based on her moral compass and her unwavering devotion to her father. Requiem is a book you want to tell your family and friends about.

Bruce L. It is a distinct honor to be the first to rate this outstanding, but heartbreaking, tale of a devastating and progressive health condition, and how deeply it touches those it enfolds. The author, who has closely experienced the cruelty of Alzheimers in a loved one, has shown a great deal of courage and consummate determination in writing it. This well-paced and brilliantly written story is at once poignant, agonizing, funny in places and all-consuming. The reader will have difficulty putting it down but had best keep a box of tissues at hand. It made this hardened, former combat soldier weep like a schoolchild through much of the second half. But I feel I have emerged from this novel with greater sensitivity to the whole continuum of dementia and its emotional impact on those who must find a way of dealing with its encroachment on their lives. There are not enough superlatives in the English language to give justice to a description of this debut novel by an obviously compassionate, energetic and witty author. It is worthy of six stars.

A book for your To Be Read list! DISCOUNTED!

Boy do I have a book for you. The paperback of Requiem for the status quo is discounted until the end of February. For only $13.95, you can add this book to your To Be Read (TBR) list!

If the Ebook is more to your liking, it is currently just $4.99 or free to Amazon Unlimited subscribers. It will always be available, but the paperback will not be, at least not until later this year.

Requiem belongs on your bookshelf!

Requiem for the status quo was picked up by a publisher two years ago this month. The eBook and audiobook will continue to be available on Amazon through my publisher, Black Rose Writing, until the end of 2019. I am arranging for different publishing options for the paperback version, however, and will be releasing the paperback later this year.

In the meantime, my publisher and I reduced the paperback price for the month of February so those who want to add this book to their library can do so at a discounted price. If you’re a Prime member, shipping is FREE!When I self-publish my novel’s paperback I’ll be sure to send out an announcement so you’ll again have access to the print version through Amazon once again. And of course, the eBook is still available on Amazon and will continue to be available forever and a day. (I will self-pub the eBook the end of the year.)

Let these recent reviews encourage you to get your copy today!

Gareth T. I see this book as a valuable resource for those who are not able to easily digest the more scientific type of information that would be provided on Alzheimer’s by medical professionals. This warm, relatable story gives a human side to the disease and while fictional, is an accurate portrayal of family life when a loved one is affected and could really help prepare and educate those who are looking for help and support.

Lisa B. Irene Frances Olson has written a fictional account of a family’s struggle with Alzheimer’s – an account that could not be more true for families facing the disease. The love, tension, confusion, terror and ultimate lesson of how life must go on springs from the pages of this beautifully written account. We come to understand each of Patrick, Colleen and Jonathon’s demons and how they ultimately overcome. Thank you for sharing this beautiful story with us Irene.