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Sammie Marsalli

Member Since: 07/2022

ABOUT THE AUTHOR

As an author 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 any one of those things. I am simply an ordinary “John Doe” 24/7 hospice caregiver, husband, sharing my experiences, reactions, inventing therapies while caring for my wife at home with Alzheimer's. We have been married 44 years, 3 kids now grown up, a great dog most of those years, a typical family on our own trying to hold on to my wife and avoid her shutdown. Hospice home care for a loved one with Alzheimer's begins on the very first day it is diagnosed. This home care without any outside help is extremely difficult but usually there is no other option. Outside professional help cannot respond “in real time” when radical behavioral changes occur. Only home caregivers can. No one has the exact key as to how to respond to these changes as there are no two profile behavioral changes alike in the same stage of the disease. Consequently, there isn't a standard therapy to apply as each person reacts differently in each stage. Even the stages of Alzheimer's vary in their characteristics. Only experiences from others can be your guide. What works for me may not work for you. Hospice home caregivers, no two alike, are completely on their own. I began to invent my own home therapy. Family home caregivers find themselves alone inventing their own hospice home care to mitigate behavioral changes and needs. I realize there are other hospice home caregivers" like me, amateurs, trying to take care of a loved one with Alzheimer's. Like everyone, I was learning the hard way by trial and error to mitigate tremendous changes in behavior with my wife. It wasn't easy as she was in the beginning of the advanced stages of Alzheimer's, unable to speak, at the time of these writings. I share my most personal experiences and reactions in “real time” to keep my wife “connected”. Hopefully, my books "Preventing Her Shutdown, Losing My Wife To Alzheimer's" and "62 Tips For Caregivers Of Alzheimer's, To Delay Shutdown," become a shortcut for hospice caregivers of Alzheimer´s to avoid some of the desperation, frustration and sadness on their tortuous caregiving journey.

Tell us a little bit about yourself, your hobbies and interests.

As an author I am not an expert or an authority on Alzheimer's. I never pretended to be. I am simply an ordinary “John Doe” caregiver, husband sharing my experiences living and caring for my wife 24/7 with Alzheimer's. We have been married 43 years and I am trying to not let go and avoid her shutdown. This book started out as a daily diary of 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 "alleviated" my continuous sorrow. Soon this diary turned into this book. Preventing Her Shutdown is my desperate effort to keep my wife with Alzheimer's "connected". In Real Time there are very personal unloaded feelings, emotions and reactions expressed, never confided to anyone while slowly losing my wife. There are no two profile behavioral changes alike with Alzheimer´s. I describe these dramatic changes with my wife who is in the beginning of the advanced stages. My reactions have always been intuitive in my desperate attempts to keep her “connected” with me, family and her surroundings. Real time experiences and actions "racing against the Alzheimer's clock" to keep her communicating and interacting every day, even though she no longer speaks are detailed in my never-ending battle to prevent her shutdown. I like to read, take walks and, listen to music. My bio is really of two people, my wife and I.

When and why did you start writing books?

This book started out as a daily diary of 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 "alleviated" my continuous sorrow. Soon this diary turned into this book. Hopefully it can help others who are on this same tortuous journey identify and relate with the events I described in this book.

What made you decide to tackle writing as a career?

I am not sure it´s a career as I am a 24/7 caregiver for my wife. I like to write which I do in my free time.

Which one of your books or characters is your favourite?

Alzheimer´s Through The Stages by Mary Moller

Which one of your books was the hardest to write and stretched you the most as a writer?

I have just finished my first book which wasn´t hard to write since it was a daily diary of events and emotions of what was going on with my wife who is in the beginning of the advanced stages of Alzheimer´s. What was very difficult were the emotions involved in watching her deteriorate little by little as I desperately try to keep her connected to me. Writing did alleviate some of this pain but I was also re-living those very sad moments.

Who is your favourite author and book?

Alzheimer´s Through The Stages by Mary Moller

What book are you reading right now?

When Reasoning No Longer Works by Angel Smits

Where do you get your inspiration for your books?

Writing started as my personal therapy to express my deepest and most private emotions of my wife´s journey never expressed not even to my family. Writing articulates my feelings and expression much better than my conversations with other people which can be more superficial. I began to write every day recording my reactions to her dramatic changes in her behavior and how I reacted especially now since she doesn´t speak.

What do you enjoy doing in your spare time?

I like to read, take walks and listen to music.

Do you have any new books in the works?

My diary continues. Hopefully it doesn´t end. I am not sure if this turns into a second book. We´ll see.