Sammie Marsalli Interview Published on: 09, Dec 2022

I was born in Modesto, California. My father, an immigrant, worked a day and night shift my whole childhood for the family to get ahead. I hardly saw him so I missed out on that fatherly guidance and sharing a father son relationship during my upbringing.

My wife was diagnosed with Alzheimer's five years ago. I started keeping a daily diary noting how my wife´s behavior was dramatically changing and how I was affected and began to relate to her differently. Writing helped me ventilate my deepest emotions and reactions in private as they were too personal to express to others. Somehow writing not only "alleviated" my continuous sorrow but also indirectly helped me make personal decisions and changes in how to interact with her behavioral changes. Taking notes almost daily seemed to be my personal escape as my laptop screen became my “ghost friend” I could talk to with total confidence. Writing daily helped me to reflect, invent and create ways to keep my wife “connected” and interactive.

Not necessarily. I believe we learn the basics of the language in elementary and high school. The ability to express in nonfiction comes from complete honesty and integrity with yourself. Many of us write like we speak and just let go. Although that expression is the most genuine and what the reader really wants, grammar problems can show up in your writing. Usually that can be excused by the reader if they are minor and if your writing is making an impact.

Experience is the best teacher. The more you write the more you learn about your mistakes and you polish your expression with better vocabulary, grammar and clarity. This happened to me and as a result I have made 4 upgrades to my book doing just that, correcting and clarifying my expression. You have to be able to accept criticism and go from there.

As a self published author you have complete control of the graphics and text on the cover.

The image of the candle recently flickering and now smoking on my book cover shows the burnout of a candle is slow just as Alzheimer's slowly shuts down life. The title “Preventing Her Shutdown” represents my desperate efforts 24/7 to keep my wife interactive, connected, mobile, and avoid a shutdown of her basic functions due to her Alzheimer's. The subtitle “Losing My Wife To Alzheimer´s acknowledges my futile efforts to fight for her life.

My wife was diagnosed with Alzheimer's at the end of 2017. As Alzheimer's begins to shut down some of her basic functions and autonomy (she no longer speaks) I desperately try to keep her interacting and connected to life 24/7. A daily diary of behavioral changes and events and what I do to mitigate became the centerpiece of my book, Preventing Her Shutdown.

This book started out as a daily diary noting my wife´s behavioral changes which not only helped me ventilate my sorrow but also helped me to react to her changes and needs. Taking notes daily in real time to at least have some reference of her behaviors, daily events and my reactions made it easier for me to remember how I felt and the decisions I made. It's easy to remember feelings in general terms such as happiness, sadness etc. but not the thought process in detail that went on during those emotions. This is why I am always writing “in real time”. Noting my actions at the moment helps justify or correct my decisions for the next day. There were no original intentions of writing a book at all until I realized after a mountain of notes after several years that I could share them to other families living this same journey alone with their loved ones and perhaps be of some help. By chance this diary turned into this book.

When you are writing spontaneously from emotions and events of the day you really don't need much world building before you start writing. The words just seem to flow. Usually after reviewing my text I look for alternative vocabulary to clarify and upgrade my expression.

My goals are quite personal and center exclusively around my wife. First, I want to outlive my wife so I can be the only one taking care of her. I ask God everyday to keep me as her caregiver. I don't think she could survive very long without me being in an instituttion. I probably wouldn't survive very long without her either. My other goal is to keep my wife “connected and interacting” as long as we both shall live. I want to keep up my diary documenting this journey as this is therapeutic and also may be a guide for others living this same situation.

There is a constant desperation on my part to be sure my wife is “connecting” and” interacting.” My worst fear is when I get a blank look in her eyes, a special look of "what is happening to me", a look "I know something is wrong". It's a look of confusion. Maybe I am reading too much in her eyes. The problem is "that look" repeats itself almost every night when I kiss her goodnight and every morning when she wakes up. She just stares at me with no facial expression at all. This scares me.

A caregiver's worst enemy is “loneliness”. This loneliness seems to go both ways. On the one hand I am always sensitive that my wife never feels lonely. I am always trying to be beside her, accompany her all through the day, looking in on her and most importantly letting her know I am always right here. I never want her to feel lonely. On the other hand, being a caregiver for my wife is a very lonely journey. What is lonely is the ongoing never ending battle to communicate, interact with someone you love inside the dementia world who now doesn't speak, a world inside a bubble immune to anything that is happening in the real world. It's lonely because I am the only one that can do this, no one can help me because they are outside this `dementia bubble '' without any capacity to accompany me on this journey. No matter what the family support you have or friends you can reach out to, this is a very lonely journey. Loneliness is not only physical, it is also emotional. Those emotions are locked up in a vault and no one has the key to unlock it. I feel lonely almost every day. I am sure my kids feel the same loneliness but very privately, remembering how their Mom once was. No doubt those feelings are locked up in a vault and probably that key has been thrown away. Loneliness is dangerous as it breeds serious depressions that are almost impossible to survive.

I thought I was in love with her before but this love has changed and has become more profound and intense than ever before. Why? My values changed as there is nothing more precious than life. Her values also changed going from being independent to dependent expressing her love more so than ever before through her gestures, sounds and smiles. Our roles in our marital life have completely changed as I always remind her I am always there for her. In fact, every evening when I say goodnight I tell her “I will always be there for you, beside you, never separated.” She understands me perfectly but she doesn't know why I am saying this. She grabs and hugs me. I am sure she feels my love for her as I feel hers. My love won't let me stop thinking about her at any given moment, always looking for opportunities to interact with each other throughout the day. I knew I was in love before but not like this. Love changes through the years becoming stronger as we confront life's challenges together and she knows we are together, never alone. Our love is much more vibrant and active than ever before. We both live for today, not tomorrow. Frankly every chance I get I try to show my affection for her. A kiss, a touch on her shoulder, taking her hand, in any possible way I can whatever the moment. It's important that she always feels my love for her. She looks at me with that facial expression "I am depending on you." I can feel her dependence that enhances our love for each other. When she reaches out for my hand I know she identifies me.

I learned there are really no fixed "do this" and "do that" rules, as there are no two profile behavioral changes alike with Alzheimer's. No one has the "exact key" as to how to respond to Alzheimer's radical behavioral changes. There isn't a standard set guide to follow as to how to respond afterwards in each stage of this disease when behaviors radically change for each person differently. Even the stages of Alzheimer's vary in their characteristics. This is why professional help simply doesn´t have an exact "to do" list. Only experiences from others can be your guide. What works for me may not work for you. Each family is therefore on their own because each profile is completely different which affects the way you react and care for this person. I describe these dramatic changes with my wife who is in the beginning of the advanced stages. She now doesn't speak.

I am certainly not an expert or an authority on Alzheimer's. I am definitely not a professional author and didn´t pretend to write an authoritative masterpiece. I never pretended to be either one of those things. I am simply an ordinary "John Doe" caregiver, husband sharing my experiences living and caring for my wife with Alzheimer's. We have been married 43 years, 3 kids now grown up, a great dog most of those years, a typical family on our own trying to not let go of my wife and avoid her shutdown. This is what families do.I began to realize there are probably other "amateur" folks like me on their own trying to take care of a loved one with this disease and possibly could benefit from my shared personal experiences. Soon this diary turned into this book

Excerpt from The Best Review: Jeffrey Hatcher
“For some people, Chapter 16 may be the most valuable for it is there that he lists a number of do's and don'ts pertinent to socializing with his wife. Chapter 31 is similarly a must read for its very important psychological savvy. In other chapters, he provides a window into what a caregiver might expect. His warnings are clear, important, and concise, ranging from keeping hazardous materials locked up to vigilantly making physical contact and loving proximity a central part of the day.”

Being a self published author definitely presented challenges in learning how to use the KDP platform. I have always used Microsoft Word and Google Docs for many years so I had some understanding of the directions and language the platform uses. There is tremendous support from Amazon as well as the KDP Community. This support got me through any difficulties I was experiencing as I was completely on my own. Sometimes it was frustrating but without a doubt a valuable learning experience as now I manage the platform without any difficulty. I never dreamed I could publish a book without outside professional help. I believe “authenticity” is key to any writing in nonfiction and perceived as such by the reader.

At the moment I have been updating the chapters in my book. I have made 4 important updates adding 12 pages. Sometimes there are new issues and events that fit into the current chapters as well new decisions and emotions which means an update. I am always taking notes daily in my diary to help me mitigate and cope. A new book may be in the works especially if there are new chapters and topics during my caregiving. Let's see where my daily notes take me. As a first time effort at writing I have always been concerned about quality and authentic spontaneous expression "in real time".

When I started writing I had no commercial intentions at all nor did I have any idea about marketing a book. My principal interest was to just “let go” of my feelings and experiences as a caregiver husband for my wife and start writing. I realized there might be others that could benefit from sharing those experiences. I believe the topic “Caregiving Alzheimer´s” is not of massive public interest, on the contrary, it's quite small as a niche in the book world. In my case I believe many potential readers are first interested in the subject and then select a book which can also reduce market potential. The subject is unavoidably and obviously very sad which means the reader must be ready for this mood change which many readers are not. Who wants to be so sad? At the same time I would very much like this book exposed but I am very inexperienced and still learning how and exploring what is available. The book on Amazon is in Kindle Select which certainly has helped as well as their Countdown Promotion.

Browsing and investigating many alternatives, I found at the top of David Kindlepreneur´s recommendations was AllAuthor. AllAuthor has been the perfect beginning for a self publishing author like me. The tools AllAuthor provides are amazing. For example, an account, a profile page, a website with a dedicated landing page, a blog for book discussion , weekly mockup images, book teasers, gif makers/banners and periodic tweets to promote the book are incredible tools of support and a great boost to expose my book especially for a self published author like me just starting out. AllAuthor opens the door and is unique and most serious as there is no comparison in the marketplace.

My general strategy for the moment as I get more experience is “carefully pick and choose” where this book can make a standout impression. Analytics availability (like AllAuthor) is important when selecting any publicity to assure integrity.