Interview with Nell Dale Dr. Nell B. Dale was one of the first women to get a Ph.D. in Computer Science in the early 1970s. She graduated from the University of Texas Department of Computer Science and remained on the faculty until her retirement from full-time teaching in 2000. She was the originator and director of the Women in Science Program in the early ’80s and has been a mentor to students and colleagues throughout her career, during which time she also authored or co-authored eighteen textbooks and co-chaired five dissertations in computer science. Dr. Dale received the prestigious SIGCSE Award for Outstanding Contributions to Computer Science Education and was the first woman to receive the Association for Computing Machinery (ACM)’s prestigious Karl V. Karlstrom Outstanding Educator Award. She has won two Hamilton Awards for the best textbook published at UT in a given year. She received the ABACUS Award from Upsilon Pi Epsilon, the Honor Society for the Computing Sciences, and was elected a Fellow of the ACM. She received a Doctor of Science, honoris causa, from Sewanee, The University of the South. “French Fries, Ice Cream, and Cucumber Sandwiches: A Poetic Memoir of a Journey with Alzheimer’s” is her first poetry collection. Tyler: Welcome, Nell. Thank you for the opportunity to interview you today. I understand your husband was the person with Alzheimer’s who inspired your book. Will you tell us a little about him and his journey as a way to introduce us to your topic?
If I had to sum him up in one phrase, I would say he was the consummate English gentleman. Tyler: Would you tell us about his struggle with Alzheimer’s? When did it begin and how did the journey end? Nell: I think his journey began years before anyone noticed it. I recently came upon a memo that I had written to myself about Al’s strange behavior in 2005, a year before his diagnosis. He accused the cleaning ladies of stealing the oven cleaner, he asked for directions from our favorite restaurant to the mall (a block away), and he forgot to take his medicine but swore he had. These are little things, but now I know that they are typical of Alzheimer’s patients. The children insisted that his hearing be tested. They would tell him things, which he seemed not to hear. His hearing was fine; he simply couldn’t process what he heard. This is also very typical of dementia patients. When our family doctor suggested thorough testing by a neurophysiologist, Al took the battery of tests and thought they were boring. I remember he said one of the questions was to spell “world” backwards. The family doctor said that there were some problems, and we should go see the testing doctor for more information. Al was completely disinterested in seeing him, so I went alone. The results showed extremely diminished capacity, almost surely caused by Alzheimer’s. Al was never introspective; he had no understanding of the implications of the test; nor did he care. He was not concerned. He was happy and content. Six months after the diagnosis, he had major surgery to remove a kidney. After two long stays in intensive care, he was home for only a short time before I realized he was not safe at home and I looked for and found a wonderful Alzheimer’s residence. He was there for almost two years. I took him out for a drive almost every day. He loved driving, and each day was new to him. He would see the same thing over and over, but it was always new to him. Here is how the journey ended: On the Thursday before Al died, On Friday morning, He went to the nursing station and He went to his room and went to bed. He roused on Sunday to say “Amen!” He died peacefully on the next Tuesday evening, Tyler: Thank you, Nell, both for the explanation and the taste of your poetry. How did you feel when you realized that caring for someone with Alzheimer’s would be the journey ahead of you, and how did your feelings and reaction to the diagnosis differ from your husband’s? Nell: Al’s journey was not an unpleasant one. He regressed emotionally to a small child. All the demands of a small child were met: food, warmth, love. He repeatedly said that he was the most fortunate person alive. If his journey was a flat line, mine was a series of ups and downs: impatience, annoyance, acceptance, understanding, fearing the journey would never end, enjoyment of the journey as I got to know my child, boredom, and finally peace. Tyler: What made you decide on such a colorful title as “French Fries, Ice Cream, and Cucumber Sandwiches”? Nell: Most days I would take my husband for a drive. He would choose which he wanted for a treat: French fries, ice cream, or cucumber sandwiches. Thus these items became a description of our outings together. Sometimes we would ask for a second serving as he would have forgotten that he had already had one. Tyler: I understand that you had never written poetry prior to writing this book, so what made you decide poetry was the way to cope with and capture your experience of caring for someone with Alzheimer’s? Nell: I didn’t decide to write poetry. As I drove back and forth to see my husband, I had conversations in my head: conversations with myself, conversations with my husband, conversations about Alzheimer’s. After having the same or similar conversations several times, I began writing them down. Putting a conversation on paper seemed to bring closure to the subject of the conversation. Tyler: Would you say writing these conversations was a way then of conversing with your husband to make up for his being unable to carry on a conversation? I imagine he went from very lucid to very confused moments? Nell: Many of the poems come directly from our conversations. Here is one of them. Lost in time Alfie, like any three-year old, loves to ride in the car. We go out for a drive almost every day. Our conversation varies little: Then like a rainbow appearing after a raging storm, Yes, Alfie, 44 years is a long time; we have been blessed. Tyler: Thank you, Nell. I find especially the moving, “I can always close my eyes and travel back to visit him.” How long has it been now since your husband’s passing, and has your perspective of the situation changed much since you wrote this poem? Nell:Al died on the 5th of May in 2009; is it close to two years now? Memories of the journey are fading, and I am remembering him more and more as he used to be. I think that is as it should be. Tyler: Nell, I know there are many other books out there about Alzheimer’s and memoirs about people with Alzheimer’s, so what made you decide you had something to say to add to the discussion and knowledge of the disease? Nell: I was unaware of the wealth of material available as I was living this journey. The doctor gave me a copy of the “Thirty-Six Hour Day.” It described the symptoms and gave some possible explanations for behavior. It even warned against caregiver burnout. However, it didn’t provide any emotional information. I had to live it. I have published my conversations in the hope that other caregivers will get some comfort from realizing that they are not alone: That their feelings are normal; they are okay. Tyler: Nell, your poems depict your journey through various stages of grief, denial, and loneliness because of your husband’s Alzheimer’s. Will you tell us a bit about those stages and how poetry helped you through them? Nell: I was not aware of going through these stages, although I must have. This time was a self-awareness journey for me. I had never lived alone before Al went into Barton House. I knew who Mrs. Nell Dale was: She was a successful wife and mother. I knew who Dr. Nell Dale was: She was a successful university teacher. Who was plain Nell Dale? I didn’t know; this journey gave me the opportunity to find out. So having and writing about these conversations allowed me to discover who I was. I am competent, decisive, and comfortable with myself. Tyler: Did you plan out the book and the order of the poems, or did you write them as they came to you? How did you decide to organize the book? Nell: I didn’t plan the organization. Oh, I suppose there is a general organization: Al’s behavior, my ever-changing reaction to the journey, and then his passing. The conversations with myself must have evolved in that general order. Tyler: What about Alzheimer’s would you say was the most surprising aspect to you that you wouldn’t have expected based on what you knew about it before your husband had it? Nell: I knew very little about Alzheimer’s, but I had heard horror stories about personality transformations, how Alzheimer’s patients were angry and argumentative. Fortunately, my husband retained his happy optimistic self throughout this journey. Fits of anger usually come from situations that the patient cannot understand or changes in routine. Facilities for dementia patients are designed to remain constant and low key, giving the patients the sense of security necessary. They don’t overwhelm the patients with large portions of food or fuss at them if they don’t eat. They make sure that the daily routine never varies. Tyler: What made you decide to include photographs in the book, and how did you choose which ones were appropriate? What did you hope the photographs would accomplish for the reader? Nell: Photographs make the people and situations real. The people involved in the conversations are just like everyone else. They smile; they laugh; they eat. Alzheimer’s patients are not just old people with a disease; they had lives with stories. Tyler: I know one person who took care of an Alzheimer’s patient who commented about how there is no reward—the end result for all your hard work is death. Was there any reward for you in the journey of caring for your husband? Nell: Yes, there was always the reward of a wonderful smile every time he saw me. Such little things made him happy: birds on a wire, ice cream and French fries, going out for afternoon tea, the beautiful blue sky. Tyler: What reaction or understanding about Alzheimer’s do you hope people will have after they read “French Fries, Ice Cream, and Cucumber Sandwiches”? Nell: I hope that people will view the disease differently. I hope that caregivers will better understand their own feelings as they read about the emotional rollercoaster of another. I hope someone will feel a little less alone knowing that their emotions are not unique. Tyler: Nell, I can understand writing the poems for your own personal therapy, to cope with your emotions, or to gain closure, as well as to help others. But did you feel any reluctance or fear over publishing them? Since you had already published many textbooks, though obviously of not such a personal nature, did that make a difference for you in deciding to make your poems public? Or did you plan to publish them from the moment you first put pen to paper? Nell: No, I never thought of publishing them. I shared a few with friends, people I thought would benefit from them. They were very well received. I published a collection of the happy poems for my children for Christmas before Al died. That was a mistake. They were on their own journeys and not ready to hear about mine. Later, I gave a copy to someone whose judgment I trusted. He suggested that they should be published alone with the not so happy ones. Being thus encouraged, I decided to publish them in the hopes of raising money for Alzheimer’s research. Fifty percent of the profits from the book sales are so dedicated. Tyler: What kinds of responses have you received about the book so far? Do you feel your book has succeeded in those goals? Nell: I had a book signing one evening. The next day one of the women who had bought one came by my house to buy two more copies. She stood in my driveway and sobbed. Her father was showing early signs of dementia, and she finally understood. Her book club has added “French Fries” to their next year’s reading list. Another woman, who had bought a copy at the signing, came to a reading. She quietly cried throughout. At the end, she said that although she had bought the book, she couldn’t read it. Now she would go home and read them for herself. Yes, the response has been very good. However, I am a writer, not a salesman. I need to get the word out. Perhaps this interview will do that. Tyler: I hope so, Nell. From what you just said, it sounds like people need to hear your story. Do you think you will continue to write poetry? Nell: Tyler, I have no idea. I am in the middle of the 5th edition of one text, and my publisher is accelerating the revision date on another. However, I was looking at the golf course the other day and saw one of the little golf carts at a distance. It looked like an armored cockroach and my mind began to wander.... Tyler: Thank you for the opportunity to interview you today. Before we go, will you tell us what the website is for “French Fries, Ice Cream, and Cucumber Sandwiches: A Poetic Memoir of a Journey with Alzheimer’s”? Nell: The book website is www.nelldale.com. My professional website is http://www.cs.utexas.edu/users/ndale/. Tyler: Thank you again, Nell, for sharing your journey. Best wishes for the success of “French Fries, Ice Cream, and Cucumber Sandwiches.”
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