With the advancement of each new stage of this disease, my learning experiences as my wife's caregiver in how to respond to behavior changes are documented in each book.

Many articles have been written about Alzheimer's disease and its symptoms, but little has been written about how to care for a loved one in the home from the perspective of a home caregiver with no experience or guidance. I was aware that it was important to note my experiences in real-time, knowing that I would not be able to remember them through my emotions as time went on. I continued to document my successes and failures in defending my wife to share with other home caregivers who might be new to this journey.

No, because taking notes in real-time during the same day when events occurred allowed me to go into detail, details I am certain would be difficult to remember as time went on. I realized that in this way, I could help other home caregivers who were as unprepared as I was.

My wife couldn’t speak, so I never knew how she felt or if she was sick. She was diagnosed with three UTI infections within three months, and she was hospitalized each time. During her first infection, she fainted suddenly and became unconscious while we were sitting at the kitchen table. I called an ambulance, and the paramedics revived her before taking her to the emergency room. She slowly recovered.

Before going to bed, I always checked up on her to see if she was sleeping. I heard her breathing with an unusual sound coming from her chest. My son and I rushed her to the hospital, and it was confirmed that she needed oxygen due to COVID-19. She was diagnosed with pneumonia and was hospitalized. I stayed beside her 24/7, as I slept on a couch in her room. I also caught COVID-19, but I didn't seem to care. I couldn’t leave her alone. I wasn’t sure if this was the "beginning of the end." We both slowly recovered.

Every night I prayed, “Please God, don’t take me before her, and when you do take her, take me the next day.”

If we had a good day, I always asked Him, “Please, just one more day like today.” I was always afraid of “tomorrow.” Every night, after tucking her in bed and saying “goodnight” to her, it felt like I was saying “goodbye.”

This Review posted on Amazon made a meaningful impact on my writing.
“Sammie Marsalli offers a heartfelt and deeply personal account of his journey as a full-time caregiver for his wife, battling the devastating effects of Alzheimer’s. Driven by a profound love and determination to preserve her sense of identity, Marsalli shares practical strategies he developed to maintain her connection to herself and their family amidst the challenges of the disease. His candid reactions reveal a tireless commitment to protecting her dignity, even in the face of uncertainty.
Marsalli emerges as a compassionate advocate for Alzheimer’s caregivers, emphasizing the irreplaceable role they play in real-time care and emotional support. His approach to counseling is rooted in empathy, creativity, and adaptability, focusing on practical problem-solving rather than one-size-fits-all solutions. His priorities lie in fostering connection, mitigating distressing symptoms like “blank-stare moments,” and honoring the humanity of both the patient and the caregiver.
This book is not only a testament to the resilience of the human spirit but also an invaluable resource for caregivers seeking guidance in preserving identity and maintaining meaningful interactions. Marsalli’s narrative underscores the transformative power of love, patience, and unwavering commitment in the face of one of life’s most profound challenges.
Based on its rich emotional depth, practical value, and advocacy for Alzheimer’s caregivers, "Holding On To Her Identity: Losing My Wife to Alzheimer’s" deserves a solid 5 out of 5 stars. Sammie Marsalli's compassionate and creative approach, coupled with his profound dedication, makes this book both an inspiring read and a vital guide for those facing similar challenges.
What’s most important to know about Sammie Marsalli’s book, Holding On To Her Identity: Losing My Wife to Alzheimer’s, is its dual focus on emotional connection and practical caregiving strategies. Here are the key takeaways:
Core Message: The book emphasizes the importance of preserving the identity and dignity of individuals living with Alzheimer’s, even as the disease progresses.
Practical Strategies: Marsalli shares creative, adaptable caregiving methods that focus on fostering connection and reducing distress for both the caregiver and the person with Alzheimer’s.
Empathy and Advocacy: His narrative highlights the irreplaceable role of caregivers, advocating for their emotional well-being and providing insight into how to navigate the challenges of caregiving with resilience and love.
Emotional Depth: Marsalli’s deeply personal account inspires and comforts caregivers by showing how patience, love, and commitment can make a meaningful difference in an otherwise difficult journey.
Audience: This book serves as both a source of guidance for caregivers and a testament to the power of human connection, making it valuable for anyone touched by Alzheimer’s, whether directly or indirectly.
If you're looking for an empathetic, practical, and inspiring resource on Alzheimer's caregiving, this book offers a wealth of wisdom.”

No, every caregiver’s journey is different. Alzheimer’s victims respond differently to the same stage of this disease. Each caregiver develops an independent path to manage these behavior changes. My guide is only one path, but no path is “set in stone.” Rather, we share experiences from each other's journey, as there is always something new we can borrow from each other to help us in our caregiving.

Try to get inside the “dementia bubble” of their loved one. Remember that what is logical to you is not necessarily logical to them. Avoid arguing and anger. Frustration can come easily. A lot of patience is needed. Exercise and constant interaction are critical. When it is possible, feed self-esteem with praise. Show your love even with the simplest gestures.

Talking Connects
I am constantly talking to her even though she doesn't speak. She must always hear my voice. She will look at me, a look I know when she understands, or she will smile. We are connecting. Sometimes she will repeat one of my words. We are connecting. She must never forget my voice.
Walks Connect
Our daily walks are so important because they enable us to connect more than any other time of the day. I will ask her to take my arm and walk beside me, and she does. I am always talking to her as we walk to the plaza.
Praising Connects
Self-Esteem became vital and key to combat any possibility of depression. It was so important to me for my wife to feel happy about herself and consequently joy with life. I was always congratulating her and praising her for something.
Touching Connects
Touching is key in transmitting a connection. Her holding my arm or hand, or me patting her on the back or shoulder, is connecting and transmitting affection. Sometimes I extend my hand to make it available and she will grab and hold it. Embracing is connecting.
Basic Tasks Connect
I constantly try to ask her to do something, and she always does, following through with simple basic tasks. She will do everything I ask her to do in her silence. We are connecting. I attempt to discover what she can do and what may interest her, and I get her to participate in simple domestic tasks.
Humor Connects
Humor is very important throughout the day. I try to make simple jokes to get her to smile or laugh. She laughs at herself when I highlight something funny she did. We are connecting.
Exercising Connects
In the plaza, we play handball at a short distance, as she truly enjoys hitting the ball back and forth to me. Her reflexes are great. She immediately starts smiling as we play. We are connecting.

When I was writing, I was reliving the many emotional pains with the complicated situations that I was faced with, which made it difficult for me to continue on.

Now that I have published this book, it has been comforting to know that I am able to share my journey, hopefully to help other caregivers with a “shortcut” to avoid some of their emotional suffering.

I wasn't sure how my wife saw me. She was starting to see me as the father of her children, but did she see me as her husband? I never asked her or said, “I am your husband, or you are my wife.” I never went that far,ever. I decided to simply “pretend” she understood our relationship. I think I was so scared of that question and what would happen if she didn't know. I probably would be devastated, so I ignored the issue and just acted normally. Her interaction with me, including her holding my hand during our walks, arranging my collar in the elevator, kissing frequently, and looking for me in the house to accompany her, was "enough for me."

The question, “Who is your husband?” or teaching her who I was, was not necessary as long as we were always interacting with each other. I only had her facial expressions and gestures to measure her reactions, as she was unable to speak. I was constantly trying to read her eyes. Fortunately, I was always able to feel her affectionate interaction, which allowed me to just act normally as her husband.

Then I realized, “What about us?” Our 44 years of marriage, does she remember that past? She recognizes and knows me well, but how far back? Did our marriage begin in 1979 or 2017 when she was diagnosed? I was unsure where I was in her memory or how she saw me as her friend, husband, or third-party caregiver. I felt that I had to make sure she realized I was at least her “best friend” and cared for her. I wasn’t sure how she identied me. It really didn't matter to me what “my label” was to her, as long as she interacted with me as always and felt she could always depend on me. I knew that I had to earn her feelings of dependence on me and somehow realize she was my wife without dictating, “I am your husband, you are my wife.” These are phrases not to be memorized. That would never work.

Reading Her Eyes
Since my wife is unable to speak, I can only try to read her eyes and try to detect her emotions. Her eyes do indeed speak. I often see stress and frustration when she is trying to say something and answer me when she can't, as she understands 99.9% of every conversation. At that moment, I respond according to my perception as I give her the answer she might be trying to say. I am guessing, but it is imperative to avoid stress and provide comfort with a positive tone.
Her eyes often speak with a blank stare, a complete disconnect from us and her surroundings. Often there is an “I don't know look” and a “yes, I know look.” I have learned to read her eyes to give me clues about what she is thinking and what she wants to say. I am, undoubtedly, relying on my intuition and perception to respond. Her eyes never speak anger or sadness. On rare occasions, she expresses happiness with a very brief smile. It's her eyes that keep us “speaking” to each other, and I can see and feel her eyes trying to talk to mine. I sometimes see frustration when she is trying to do something, and she is unable to do so. Reading her eyes for expression is all I've got, and this can be tough emotionally for any caregiver husband like me.
My greatest frustration is her eyes that never say, “I don’t feel well,” or “I am in pain.”
Speaking With Affection
She speaks with affectionate gestures, which are the most important for me. She will unexpectedly grab my hand and hold on at any time of the day, when we take our walks, having lunch at the kitchen table, or at night when I tuck her in bed. Furthermore, she doesn't want to let go. Even when I bawl her out for something out of my frustration, she will grab my neck and hug me as if to say, “I know, you are right.” She kisses and hugs me at the slightest gesture on my part, to which I am always ready to respond in kind. This is the one moment I know how she feels, and I am thrilled because it means she is speaking and “connecting” with me.
Speaking With A Smile
When I see her smile, this means she is happy, so I am constantly searching for ways to provoke this expression of happiness. I did nd a guaranteed smile. When we leave the beauty shop every Thursday, walking down the street back to our car, I sing to her with a loud chant, “How beautiful you look,” and she repeats my words, imitating my chant and laughing. At the street corner, waiting for the stoplight to change, she grabs me with a hug and a kiss.

I regret that I started this journey without getting any information. I was responding to every behavioral change “on the fly” only with my intuition and logic. I later realized that information was the best defense from the very beginning to learn what may lie ahead and how I may react.

Yes, I am currently in the process of writing another book focusing on my caregiving challenges with other aspects of this disease.

AllAuthor has been at the forefront of and key to exposing each of my three books to the public. I am grateful to them for providing independent authors with exclusive opportunities to showcase their work.

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.