About Preventing Her Shutdown, Losing My Wife To Alzheimer´s, by Sammie Marsalli:
Preventing Her Shutdown is an inside look of what an ongoing caregiver spouse goes through in my desperate effort to keep my wife with Alzheimer’s “connected”. Very personal unloaded emotions are expressed and actions taken, never confided to anyone while slowly losing my wife.
She doesn’t speak at all. She expresses only some sounds and shows a lot of anxiety. This becomes a real challenge trying to figure out what she wants and how she feels. How do we communicate? How do I talk to her? How does she tell me what she wants or needs? We both had to learn how to interact and communicate with each other.
My desperation as a spouse caregiver is that we are constantly “connecting” as this alleviates my greatest fear of a “shutdown”. Detailed is how everyday, every moment I can, I try to create an opportunity to “connect”
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Author Bio:
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 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. I began to realize there are probably other “amateur” caregivers like me on their own trying to take care of a loved one with the Alzheimer´s Disease and possibly could benefit from my shared personal experiences. Soon this diary turned into this book.
Writing not only “alleviated” my continuous sorrow but also indirectly helped me make personal decisions and changes in how to interact with her dramatic behavioral changes as her 24/7 caregiver. I am 73 years old and my wife is 71 and we are just trying to continue to grow old together as long as we can.
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.
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.