Interview with Deborah Shouse Today, Juanita Watson, Assistant Editor of Reader Views talks with writer, speaker, editor and creativity catalyst, Deborah Shouse about her award-winning book “Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.” Shouse’s book won second place in the “Reader Views Annual Literary Awards 2006” – Nonfiction – Memoir/Biography/Autobiography category. Deborah’s writing has appeared in The Washington Post, The Christian Science Monitor, Reader’s Digest, Newsweek, Woman’s Day, Hemispheres, Family Circle, Spirituality & Health, Chicago Tribune, and MS. She writes a weekly column on love stories for the Kansas City Star, has co-authored Working Woman’s Communications Survival Guide, which is in its fifth printing and Antiquing for Dummies. She has written several memoirs and business books and has been featured in more than a dozen Chicken Soup books. Juanita: Welcome to Reader Views Deborah, and congratulations on your second place win in the Reader Views Literary Awards. How does it feel?
Juanita: We are honored to have the opportunity to talk with you about “Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.” Would you start be telling your readers what your book is about? Deborah: Love in the Land of Dementia offers readers a sense of compassion, deepening love and increased connection with the person who has Alzheimer's, along with practical tools for living with dementia. The book chronicles my journey through my mother’s Alzheimer’s, and deals with the complex issues of loss and change, of flexibility and acceptance, and of celebrating the moments. These are stories of hope and they help people understand, connect with, and appreciate the process of Alzheimer’s and the Alzheimer’s patient. Juanita: When did this happen and how long was this journey? Deborah: Mom was around 77 when she began exhibiting confusing behavior. She was 88 when she died. Juanita: What can you tell us about your mother before her diagnosis? Deborah: My mom was an artist, a reader, a great listener and a random gardener. She loved to travel. She had an adventuresome spirit. She served as an Army nurse in WWII. Juanita: What are some of the early symptoms of Alzheimer’s? Deborah: One person told me: When you don’t remember where you parked your car, that’s normal. When you don’t remember that you don’t remember where you parked your car, that’s something to look into. My mom’s early symptoms included forgetfulness and being very repetitive in her questions or stories. Juanita: What was your initial reaction to the news? Deborah: When I understood my mother had dementia, I was devastated and I was scared—scared for my mom, my father, and for myself and my brother. Juanita: Did you have any experience with dementia or Alzheimer’s before her diagnosis? How prolific is this disease? Deborah: Years earlier, I had worked in nursing homes, so I had experience being around people with dementia. But being around someone I loved who had dementia was different. For Alzheimer’s, the statistics are daunting and the numbers are growing:
Juanita: Why did you decide to write your book? Deborah: I began writing about Mom’s Alzheimer’s so I could make sense of what was going on. Then I continued writing because I wanted to discover what was good in the situation. For me, documenting my mother’s journey helped me truly appreciate my mother just as she was. I found so many gifts in the journey and I wanted to share those blessings with others, to offer people increased hope and understanding. Later, I decided I wanted to donate all the proceeds from the book to Alzheimer’s programs and research. So far, we have raised more than $14,000.00. Juanita: That is an incredibly generous donation Deborah. How were you able to stay positive amidst the decline of your mother’s disease? Deborah: Writing helped me. Also, I was determined to find the gifts in the situation and I began noticing the things I appreciated about my new relationships with Mom. My life partner Ron helped me by listening to me when I was feeling discouraged, as did my friends. My father and I helped each other—always noticing the smallest of blessings, always watching for Mom’s smile. My brother, who was living out of town, was also part of our team and his presence helped as well. Juanita: “Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey” has powerful messages of hope and love. Would you elaborate? Deborah: Even though Mom had changed, some of these changes were for the better. She was more affectionate. She was more playful. She laughed easily. As the Alzheimer’s advanced, she was able to look into my eyes for long periods of time. I felt like I had a deep emotional and spiritual connection with her that went beyond words. Even when my mom could no longer speak or recognize me, I still learned from her. I practiced noticing what I had, practiced different ways to connect. When I entered my mother’s present world without comparing it to what was, I found humor, meaning and some enchanting details. I was able to stay connected to my mom until the end of her life. Sometimes the connection was just a loving touch or eye contact, but it was deep and real. Juanita: Deborah, what gifts did you find being a caregiver to your mother? Deborah: I developed a deeper relationship with my Dad through the caregiving process. I really treasured getting to be with my mom through this process (at least most of the time. There were moments of sadness, frustration or discouragement of course.) My father died before my mother and I had the gift of being present with my mother when she died. Until my father died, he and I were a team. Even when Mom needed to go into a nursing home, then into an Alzheimer’s unit, one of us visited every day and we talked a lot about Mom and how we could connect with her. Juanita: What held your family together throughout this experience? Deborah: My brother and I worked together, trying to help my father feel centered, cheered and supported. My father and I worked together to help my mom feel loved and supported. My brother and I helped each other by talking about our own fears and worries. We had wonderful friends and family that gave us love and support and asked us questions and listened to our answers. Juanita: Deborah, would you comment on the challenge to taking care of yourself – physically, emotionally, and spiritually – during this time? Deborah: My partner Ron and my friends helped me a lot. They offered me listening and nurturing. My writing helped me, as did exercise and remembering to do things that delighted me. I do think it’s so important to remember to think of yourself and to really spend time honoring and caring for yourself. Juanita: How are you a different person now, having gone through this experience? Deborah: I am less scared of losing the rational mind. I have more understanding of the vast power of love. I see how important it is to live life now and to really be present. I was around many people who had Alzheimer’s and I learned how beautiful and amazing these people and the people who care for them are. I have learned to more often see the gifts each person has to offer, regardless of intellectual or physical ability. Juanita: What are you ultimately trying to convey to readers through this book? Deborah: I hope to help people learn to look for the gifts and blessings in the Alzheimer’s process. I hope to help show people ways to stay connected with the person who has Alzheimer’s. For me, this was a deep spiritual journey and I hope others will have their own personal journey, if they are faced with a loved one who has Alzheimer’s. There’s also a lot of humor in the book and I hope to help people remember to look for and enjoy the humor. Juanita: How else are you sharing your message? Deborah: Our program, entitled: Love in the Land of Dementia: Finding Hope in the Caregiver's Journey, is a dramatic presentation of personal stories that help people understand, connect with, and appreciate the process of Alzheimer’s and the person with Alzheimer’s. Caregivers, family members, friends, health care professionals, medical students, spiritual leaders, and mental health professionals have all benefited from listening to our programs. We have performed for Alzheimer’s Associations and caregivers groups in the United States, Canada, New Zealand, Italy, Ireland, England, Puerto Rico, the U.S. Virgin Islands, and Costa Rica. At a performance in Halifax, one of the Alzheimer’s board members said, “This is the most meaningful 40 minute presentation on Alzheimer’s I have ever experienced.” Juanita: Deborah, how can readers find out more about you and your endeavors? Deborah: I’d love to have them visit our website www.TheCreativityConnection.com. Ron and I love to share our stories at caregiver’s conferences and other venues. You’ll see pictures from some of our international travels and also read about our exciting new program: The HERO project. Should you want a book, you can contact your on-line or local bookseller. Or you can call 913-831-3888, the Heart of American Alzheimer’s Association. There you can make a tax-deductible donation to Alzheimer’s and receive a book. They cover the cost of mailing. All the monies go to Alzheimer’s programs and research. Juanita: Thank you so much for talking with us today Deborah. Your book will certainly offer critical support for anyone who silently suffers with a friend or family members Alzheimer’s diagnosis. You are a very inspiring woman having transformed you and your family’s journey into something that will benefit many people. Before we let you go, do you have any last thoughts for your readers today? Deborah: For me, celebrating and appreciating things exactly as they were became a deep spiritual practice. When I was able to focus on what I had, rather than what I had lost, I was much happier and much more present for my mom and for others around me. Listen to interview on Inside Scoop Live |
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