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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In my book Never Giving Up & Never Wanting To I write about my 44 year old mother as she stood steadfastly by my father as he lay dying from a brain tumor. In the six months he was at the local hospital, after each workday she would spend as much time she could at his side. When my grandfather was at the Veterans Administration hospital in Fayetteville, North Carolina dying from cancer, my grandmother would close the little mom-and-pop restaurant she owned and operated so she could go to visit him nearly every day. This trip was about one hour each way which for a little old lady was quite a journey. My family has always risen to the occasion and has stood by the sick and dying without hesitation.
When and why did you begin writing?
My writing career began back in the 1970s when I was a Logistics Specialist for various government contracting organizations. My writing was of a technical nature about various Navy systems and subsystems. Some writing efforts were just paragraphs where others were multiple chapters to be included in presentations, manuals and training materials. In the late 1980s until the mid-1990s I was the sole proprietor of a business that supported small businesses developing a wide variety of written materials including business plans, advertising copy and general presentations. Additionally this business supported individuals in writing/editing resumes, writing letters of complaint to corporations, editing op-ed pieces and editing graduate student’s dissertations. I did not start writing my “Great American Novel” until about 2010 when I began putting the pieces of Never Giving Up & Never Wanting To together.
What do you consider the most challenging thing about writing?
The most challenging thing about writing for me was identifying my audience. I was told early in my writing career to write to the lowest common denominator. I thought long and hard on who my audience was to be. Since my audience will most likely be the “average person on the street” I endeavored to write to the person that may only be high school educated. I don’t mean to sound like an elitist snob, but people with money tend to be better educated and, quite frankly, will likely be able to afford a professional caregiver or institutionalization. The second most challenging thing about writing for me was just finding the time to do it. If you read my book, you will find that I have a major set of responsibilities with caregiving and handling the duties of homeownership which puts a crimp in writing efforts.
Do you intend to make writing a career?
There currently resides on my computer several pages of rough notes for the follow-on book to Never Giving Up & Never Wanting To as there will be an obvious change in the principals of the book, and hopefully there will be improvements to report in the search for better treatments or a cure. For those who have read the book and have gotten to know my wife, Lynne, and our struggle with this disease, I feel that they will want to know how things progressed until the end. I don’t know if after this second the book if I would continue writing or not. I do enjoy it, but I don’t know if I am a one subject expert willing to beat back the competition with additional neurologic disease offerings.
Have you developed a specific writing style?
I don’t have a specific writing style. If I were to put a name to it, I would call it conversational or casual. But as it says in my book I am not a writer – I am a storyteller. I believe the importance of clearly conveying the message outweighs the importance of the style.
What is your favorite quote?
My favorite quote comes from the movie My Heroes Have Always Been Cowboys. “Just trying to get by without shoving.”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.