Writing, Caregiving and Alzheimer’s Disease by author Barry Tutor
ABOUT NEVER GIVING UP & NEVER WANTING TO
Like most, I knew about Alzheimer’s disease. It causes old people to forget. When my relationship with this disease began, it highlighted how little I knew. Following my widowed mother’s Alzheimer’s diagnosis, I researched this disease to gain insight about my new role as her caregiver and decision maker. What I learned and experienced during her affliction still left me somewhat unprepared for what was yet to come. Sixteen months following my mother’s diagnosis, my dear wife and best friend was diagnosed with early-onset Alzheimer’s. Though now I was familiar with this silent killer, my wife’s diagnosis set into motion many changes and challenges in our lives. Someone is diagnosed with Alzheimer’s every sixty-eight seconds. Currently, Alzheimer’s is the only disease in the top-ten causes of death that is on the increase and has no means of prevention and no possible cure. Given these facts, support for those afflicted relies on increasing levels of caregiving as the disease progresses. Let me explain something about this “old folk’s disease.” Alzheimer’s affects more than just parents and grandparents. It is also the disease of siblings, spouses, and children. Alzheimer’s forces many families to decide between home versus institutional care. An estimated fifteen million caregivers provide some level of care to the Alzheimer’s victims still living at home. No matter what level of care you are providing, the importance of preparation is paramount. Arming yourself with knowledge begins that preparation process. I was unprepared for the roller-coaster ride my life became as the sole caregiver for two Alzheimer’s victims. To meet their varied challenges, I adapted and developed multiple techniques for targeted personalized care. If only I knew then what I know now. By sharing my knowledge and experience, I hope to better prepare you for your caregiving journey.
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Writing, Caregiving and Alzheimer’s Disease
When you become a new author questions always arise from interviewers, publicists and readers: “Why did you write this book” or “What was your inspiration?” While I would have enjoyed writing about wizards, superheroes, spies or master detectives I chose instead to write Never Giving Up & Never Wanting To about the true heroes that often go unnoticed in the world of Alzheimer’s care. This is a world I know far too well as I have faced the horrors of Alzheimer’s twice; my late mother lost her battle in 2010 and my wife is currently in her fourteenth year fighting the disease. What sets my book apart from most who have authored similar books; I cared for both of them on my own and simultaneously until I was forced to put my mother into Alzheimer’s assisted living in 2007 because, even though I am talented at all things caregiving, I could not be in two places at once.
At present, there are some 5 million Alzheimer’s patients in the United States and most are cared for by approximately 15 million caregivers. What do the majority of these 20 million people have in common? When the newly diagnosed receives the bad news, they are essentially cast to the wolves with little more than a patient starter pack of medication and instruction to go to the Alzheimer’s Association website for assistance.
In Never Giving Up & Never Wanting To I assist caregivers in recognizing many aspects of caregiving and planning that are often overlooked when assuming the responsibilities of another adult’s life as the disease takes over. Along with addressing the activities of daily living I make the reader aware of facility planning, financial and legal preparation, hospice care, psychological issues, clinical trials, and evaluating institutional care facilities should home care become unrealistic or impossible. In my interactions with other caregivers, both professional and volunteer, I found that I was not alone in my “seek, and ye shall find” instructions from the diagnosing physician. While I am an experienced computer user, it dawned on me that so many of the people that receive this diagnosis and the “instructions” may not be computer savvy enough to access the necessary information for what’s next.
One of my inspirations for writing Never Giving Up & Never Wanting To came from another author. A few months after my mother was diagnosed my wife and I attended a health fair where an independent author was speaking about her husband’s diagnosis of Early Onset Alzheimer’s and his care. Being fairly new to Alzheimer’s care, like most others in my situation, I welcomed the chance to gain more information from someone who had been there before. By the fourth chapter, I realized this woman did not author a book about Alzheimer’s care but instead penned a book about Alzheimer’s care in Fantasyland. I occasionally think back to her book having spoken with hundreds of other caregivers, watched over my mother until her death and while I stand watch over my terminally ill wife of nearly 32 years and feel this woman must have had it pretty easy in caring for her Alzheimer’s patient.
I did not set out to write the next bestseller but instead an unvarnished, no holds barred look at the real world of Alzheimer’s caregiving. While I would like to sell many copies; becoming the next longtime resident of the bestseller lists; I am a realist that understands that nobody, let me repeat nobody, expects this disease to come barging into their lives until after losses begin.
When I began my “career” as an Alzheimer’s caregiver, I knew little more about the disease than it causes old people to forget things. In that regard, I feel I was as informed as the average person that has not experienced Alzheimer’s or the caregiving involved. Every 68 seconds someone receives the diagnosis of Alzheimer’s. It is imperative that the potential Alzheimer’s patient, as well as his or her caregivers, understand the disease, caregiving requirements and how to plan for the future.
The purpose behind my book is to help current caregivers, especially those who are new, potential caregivers of which there are many and the Alzheimer’s patient who may not fully understand that Alzheimer’s is a progressive degenerative neurologic condition that is always fatal and there currently exists limited treatments to assist them through the course of the disease.
I have written my book with an “I have been there, so I know what I am talking about” attitude. I wish for the reader to come away with an appreciation of what my wife and I lost when Alzheimer’s invaded our lives, but also the level of care that I render everyday from a knowledge-base of observation, in-depth research and the love and respect that I have for my best friend.
ABOUT BARRY TUTOR
As a lifetime problem-solver, I faced the challenges of caring for my two AD victims by researching the disease and developing caregiving skills to assure their comfort and care.