Deborah Shouse, author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey
BY DIANE SALUCCI
Deborah Shouse is a former Writers Place board member and author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. Deborah has also written for such publications as the Washington Post, Christian Science Monitor, Reader’s Digest, Woman’s Day and Family Circle. She writes a weekly column for the Kansas City Star and has authored and co-authored a number of books. Her writing has been featured in more than four dozen Chicken Soup books.
Q. What inspired you to write a book about your experience of caring for a mother with Alzheimer’s?
A. I didn’t initially plan to write a book about dealing with my mother’s illness. Rather, I was using writing, as many of us do, to process my feelings about what was happening with both of my parents. It was a means of staying sane through a chaotic situation. There was so much grief and confusion, so it started out as more of a journal. Then I began documenting what was happening during my visits from a more objective point of view. I wrote about my mom’s behaviors, as well as what my dad was going through. As I read my notes, I thought it might be interesting to turn my experiences into a personal essay--my main art form at the time. I decided to present this essay at an upcoming literary event, where I was also reading two short stories. I didn’t know if anyone would be interested in it, as it was so personal to me. But afterward, so many people came up to me to share their own experiences with loved ones in various stages of dementia. This was a sign that a lot of people were going through the same issues I was. From then on I started turning my observations into essays.
Q. So you became more purposeful then in writing about your experience?
A. Yes, I began submitting these essays to such publications as the Washington Post and Women’s Day. Then my writing partners suggested that I might want to write a book. I knew I would need chronology, so I became more mindful of creating a whole arc to the story.
Q. At that point, were you thinking about how you would get it published?
A. No, I just worked on putting it together into a whole. I didn’t finish the book until my mom died, so I was actually working on the essays over a five-year period, during which I was mostly doing other writing. I had help from various critique partners, and then I hired a professional copyeditor to take a fresh look at it. Only at the end of that process did I hire a proofreader for a final review.
Q. Once you completed that process, why did you choose to self-publish the book?
A. What inspired me was the wonderful help I received from our local chapter of the Alzheimer’s Association. It was a kind of inspiration – an intuition – that this would be a way to give back to them. I decided not to take any money from this book, but to donate all sales various non-profit organizations involved in dementia.
Q. How did you get the book produced?
A. Friends from my writing community were helpful in pulling all the resources together to get it printed in paper form. The book was initially published several years ago, so an e-book was not an option then.
Q. How did you promote the book yourself?
A. My life partner Ron Zoglin and I developed a presentation of the stories that we could perform together, even before the essays became a book. We set up speaking engagements at not-for-profit groups involved with helping caregivers, particularly those caring for Alzheimer’s patients. Whenever we traveled internationally we would volunteer to give our presentation to caregiving groups there. Eventually we had the book available to sell for donations to the organizations.
Q. What made you decide later to find a traditional publisher?
A. After we exceeded our goal of raising $50,000 with the book, I decided to publish it traditionally and still donate a portion of the proceeds. By this time, my former agent had retired, so I was starting fresh to find the right publisher. During a brainstorming session with an author friend, she offered to introduce me to her publisher, Central Recovery Press in Las Vegas. I emailed a query and then sent the transcript, which they accepted. Because of the introduction, I did not go through an agent, but went directly through an editor at the publishing company. I then hired an intellectual property attorney to review my contract. The book was published November 2013.
Q. How are you handling promotion for the book?
A. I have agreed to handle all local promotions and connect with caregiver groups. The publisher is doing the initial national publicity. They started in 2013 by introducing the book at the American Library Association Conference and then put an ad in Psychology Today and arranged for a Publisher’s Weekly review. We are just at the beginning stages, so the book promotion will progress into 2014. And I am doing a lot of social media, including blogging and tweeting, through my website at http://deborahshousewrites.wordpress.com/. So it is a partnership.
Q. What is next for you?
A. My stories focus on finding the gifts in the caregiver’s experience and on staying connected with the person who has dementia. Readers tell me that my ideas for staying connected and my messages of hope are very helpful. My vision is that millions of people worldwide will be helped by this book.
To learn more about the book and Deborah’s work, visit: www.deborahshousewrites.wordpress.com/news-reviews/
Rainy Day Books has autographed copies of Love in the Land of Dementia. Call 913-384-3126 or www.Rainydaybooks.com You can also buy the book at Barnes & Noble and your favorite local or on-line bookseller.
Follow Deborah on Twitter: @DeborahShouse
Enjoy her blog on Navigating the Caregiver's Journey at www.deborahshousewrites.wordpress.com/
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