A while back I had the notion that I would begin a series of interviews with authors. I wanted to talk with people who had written about themes I found compelling – love and courage and growth and self-awareness.
I connected with a couple of writers whose works had resonated with me and asked if they wanted to do an interview. My life is pretty full-on at the moment, so I won’t go as far as to promise this will be a regular series, but you will probably see some interviews from time to time.
The first of these is with Deborah Shouse, who has written Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. The book chronicles her mother’s journey with Alzheimer’s and Deborah’s very personal response to her mother’s disease.
I have some experience with the topic, as my father suffered from dementia before he passed away, and many of my peers are dealing with similar issues with their loved ones. However, what struck me most about Deborah’s book was not necessarily the subject of Alzheimer’s, but her own personal response to dealing with a frightening and emotionally-laden loss.
Instead of feeling burdened by the experience of caring for someone who had previously cared for her, she used it as an opportunity to further open her own heart and accept without judgment each stage of the disease. At its heart, this is a story of courage, connection, deep humanity and unconditional love.
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K: I understand you kept journals throughout your mother’s illness; however, at what point did you make the decision to write a book and what prompted that decision?
Deborah: I started turning my journal entries into essays. I read one of these essays at a literary event and so many people came up to me afterwards, saying: “My mother has dementia… My father…My aunt…” I felt an immense connection with these caregivers and wanted to continue sharing my stories.
K: Each scene in your book is written with such immediacy and detail that I feel like I am right there beside you, experiencing everything along with you. How did you manage, as you were writing this, to put yourself back in that space and capture the emotional and material intricacies of what had happened years earlier?
Deborah: I used my writing to help keep me sane, balanced and enjoying the present moment. I would take notes of what Mom said and I would often journal after I spent time with my parents. For me, it was a way to focus on noticing the gifts and lessons I was so abundantly receiving. It was also a way to record Mom’s last years and share these meaningful experiences with family and friends.
K: You do a beautiful job of describing the effects of Alzheimer’s and, in turn, the effect of those changes on your family. Your mother gradually loses the capacity to perform the simplest of functions we take for granted, such as dressing herself or recognizing her loved ones, and her personality begins to change. While you mourn each loss, you also show an amazing capacity for accepting the changes and simply staying present in the moment and loving your mother as she is. Can you talk a little bit about that?
Deborah: This became my spiritual practice—accepting Mom for who she was right then. Of course, that’s what we all want—it’s the essence of unconditional love. Each time I was tempted to feel sad or upset, I allowed myself those feelings of loss and also looked for something positive. I always found it!
K: In one scene you give your mom a blanket and she stares lovingly at it and coos, “what a sweet baby.” This reminded me of when my own mom was dying of cancer and was heavily medicated. We gave her a teddy bear and she held it to her chest and spoke lovingly to it, calling it Trevor (her grandson’s name). It was both beautiful and heartbreaking. You then go on to say something that really resonates with me: “Maybe this is the lesson we are all to learn eventually. In the end, only love is left.”
Deborah: I learned so much about love from being with my mother and father during those days. My father showed me how to truly love and my mother let go of her rational rules and was really able to receive affection. Being with her, looking into my mother’s eyes for 30 minutes was a deeply connective experience.
Q: I’m a big proponent of the healing power of storytelling, and you mention this in your book as well. In fact, it has influenced your career to some degree, has it not? Can you share your thoughts on some of the gifts of storytelling?
Deborah: The more we share our stories, the more we realize how connected we all are. Caregivers often feel isolated. Ron and I have been able to share our stories all over the world and we’ve learned how deep our similarities are. In Turkey one man said to me, “Your story is my story.” That kinship, that sharing of the heart, means so much. Plus, there’s often a social stigma with dementia. The more we share the richness of this journey, the more support we’ll get for those who live with Alzheimer’s.
K: I know that many people who have been through challenging experiences, such as the complicated loss that occurs with Alzheimer’s, report that the experience changed them in some positive ways. While living through your mother’s illness and death was clearly very painful, did it leave you with any gifts?
Deborah: I feel so lucky I got to travel with my mom on this journey. My gifts include widening my understanding of love, opening myself to slowing down and patience, surrendering into accepting a person just as they are, learning to be in the present and appreciate the gifts of the moment.
K: Writing and publishing a book is a monumental journey. Now that this is behind you, what is next?
Deborah: I am working on a book about creativity and the caregiver's journey. The book will focus on creative activities to do with your loved one who has Alzheimer's and will also offer ways for caregivers to creatively frame this tender and challenging journey. I welcome ideas from your readers. What creative activities have you explored with a person who has dementia? And how do you keep yourself connected and creative?
K: Thank you, Deborah, for taking the time to share your thoughts with us today. I wish you all the best on your next endeavor.
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You can find Deborah’s book here. She donates a portion of proceeds to charity and to date has raised over $80,000 for Alzheimer’s programs and research.
In addition to her book, Deborah writes a weekly love story column for the Kansas City Star. Together with her husband, Ron, she travels all over the world to perform her writings to audiences in places as far flung as New Zealand, Nova Scotia, Puerto Rico, England, Ireland, Chile, Costa Rica, Italy, Turkey, Ecuador, and the U.S. Virgin Islands. An amazing lifestyle, to say the least!