Preventing Her Shutdown by Sammie Marsalli

Preventing Her Shutdown book listing sites Sammie Marsalli

The Purpose of This Book:

This book started out as a daily diary noting my wife's behavior and my reactions which not only helped me ventilate my sorrow but also how to react to her changes and her needs as her caregiver. The laptop screen became my "ghost friend". Outside professional help just doesn't work as there are no two behavioral reactions to Alzheimer´s exactly alike. Each person reacts differently to this disease which is why there isn't an exact "to do list". An outside professional also is of no help for the same reason. Every family attending their loved ones as caregivers are on their own. There isn't a guide to follow.
I am a typical husband “amateur caregiver” on my own inventing and creating ways to keep my wife interactive and I wanted to share these efforts with other “amateur caregivers” like me living this same journey alone with their loved ones.

How do I connect with my wife and get her to connect with me? This is always a constant desperation as her caregiver  especially because she doesn't speak. I am always afraid she will stop connecting with me, especially when I get that “blank lost look” which happens often. Described are the different things I do when that happens to get her to reconnect, sharing details of “what worked and what didn´t work for me.”  

My Method for Writing:

I am always writing and taking notes in real time of her behaviors, daily events and my reactions. I take notes as things happen so I can easily remember how I felt and reacted. 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 reactions at the moment helps justify or correct my decisions for the next day as her caregiver.

The Book Cover:

The image of the candle recently flickering and now smoking shows that light has slowly disappeared just as Alzheimer's slowly shuts down life.

The Title:

The title “Preventing Her Shutdown” represents my desperate caregiving efforts to keep my wife interactive, mobile and avoid a vegetative state. The subtitle “Losing My Wife To Alzheimer's” acknowledges my futile efforts to fight for her life. At the moment no other title clearly reflects the content of this book.

My Favorite Moments and Least Favorite:

Chapter 31 “My Dream Comes True” was my favorite moment as I described how I was able to dance with my wife at my son's wedding, the greatest thrill of my life. Chapter 7 “Slipping Into Oblivion” and Chapter 20 “Blank Looks'' were the saddest moments of my writing as these chapters describe how we couldn't “connect” with each other as she couldn't identify me. Connecting is a “daily must” for all caregivers of Alzheimer's.

Words That Summarize This Book:

Alzheimer's Caregiver Fight To Prevent Her Shutdown