Straight from the Mouth of Barry Tutor, author of Never Giving Up and Never Wanting To

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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Can you give us a go-for-the-gut answer as to why you wanted to be an author?

Well here’s my go-for-the gut answer to why I wanted to be an author. I didn’t want to be an author, but rather a purveyor of accurate information for the general public facing the unknown world of Alzheimer’s disease. I took the mantle of author when I was thrown into the deep end of the pool when my mother was diagnosed with Alzheimer’s disease, and I realized the how-to “manual” for her disease was a series of websites. My entry into Alzheimer’s care came when I was in my 50s and an above average user of the Internet and numerous computer apps. While I do represent the “average” caregiver, so many caregivers are in their 70s and 80s and have two real problems when it comes to receiving a diagnosis such as this. First they may not be computer savvy enough to find the disease-specific websites and may, in fact, Google their way into a sales pitch or misinformation in general. Second the older patient is very quick to accept the doctor’s brief diagnosis and heartfelt sorrow at the diagnosis but will not ask questions because they have been trained to take the doctor’s word as gospel and assume that the doctor will be there to help them as the situation goes from bad to worse. I didn’t want to be an author for the glory of writing the next bestseller. I did it because by my nature I’m a helper and the quickest way to help, especially people in their golden years, is to not depend on the computer to dispense information, but to put it in hard copy, written form.

Tell us (we won’t tell promise!) is it all it’s cracked up to be?  I mean what are the perks and what are the demands?

Perks? I didn’t know there were any! My perks are probably different from what you’re expecting. My perk is the happiness or relief that a reader of my book conveys when they find out they are not in this alone. I am truly not in this for the money (if there were any) but rather to resolve the problems or identify the potential problems that caregivers face when a terminal illness becomes a reality. The demands of being a published author are quite simple, and you are reviewing one of them. The never-ending questionnaires for marketing, publicity and interview preparation – I had no idea. My previous writing efforts were reviewed by few and were often required reading for naval personnel and business professionals.

Tell us for real what your family feels about you spending so much time getting your book written, polished, edited, formatted, published, what have you?

My small family was quite overjoyed at my writing effort and even more overjoyed when they saw the finished product. They changed their tunes slightly when they found out they were not the stars of the show but instead were part of the “what to watch out for” parts of the book. While I ruffled a few feathers, all has been forgiven. Their reactions could also be the subject of an entirely different book discussing the three versions of the truth – yours, mine and reality. While I did not beat them up as badly as they should have been I also did not pull too many punches. If you spend time with my book you will find that my “real” family is my wife whom I must schedule around because the Alzheimer’s disease has destroyed her sense of time, my 60 pound lab mix who is always of great benefit to my sanity and until recently my constant companion cat who passed away on October 9, 2013 after a long battle with renal failure. (Another example of Never Giving Up & Never Wanting To as he was in treatment for over 15 months.) This is my real family, and they are all quite understanding.

In writing your book, how did you deal with the phone ringing, your family needing dinner or your boss calling you saying you’re late?

While penning my classic Never Giving Up & Never Wanting To the only issue I had to deal with that interrupted my writing efforts was the occasional telephone ring. But then there is always Caller ID  a true blessing for the busy writer/caregiver. 

How about the social networks?  Which ones do you believe help and which ones do you wish you could avoid?

I believe the social networks can play a role in writing, publicizing and getting feedback on your work. That being said I feel that too much wasted time on Facebook and Twitter does nothing but irritate an already busy professional. That’s not to say I don’t participate in Facebook and Twitter – but my exposure is limited as my time is limited. And frankly there are too many people on Facebook that I think are still in high school even though the calendar says they’re 30, 40 or 50 years old. As with anything technological, you have users, abusers and people who don’t care or don’t want to care.

Now…can you tell us what you love about being a published author and how all those things above doesn’t matter because it’s all part of the whole scheme of things and you wouldn’t have it any other way?

I am unsure I understand your question about how things have changed since I became a published author. In the area we live; publishing isn’t so unusual, so a new book is a lot like going to the grocery store – so many people have done it, so most respond with “that’s nice” or they stare at you blankly like they have never heard of books. So have things changed in my little world now that I am a published author? No ticker tape parades, no key to the city, no man of the year, no caregiver of the year, no author accolades of any description because of my foray into the world of authorship. In the grand scheme of things, it is fun having a copy of the first book off the press on my mantle. But, more importantly, the published work is another endorsement to my position as the subject matter expert on Alzheimer’s caregiving. Do I wish I had the aforementioned accolades? Who wouldn’t? I just hope, as I said before, that my message gets out concerning the necessity of preparation for caregiving especially where neurologic conditions are taking control over the victim so subtly that it sneaks up on you with virtually no warning except, in most cases, the calendar pages turning.

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.