Preventing Her Shutdown 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.

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 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. Soon this diary turned into this book. Hopefully, others living this same reality can benefit from my shared experiences.

There are really no fixed “do this” and “do that” rules, as there are no two profile behavioral changes alike. 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. 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. My reactions have always been intuitive in my desperate attempts to keep her “connected” with me and her family. My experiences and actions “in real time racing against the Alzheimer’s clock” to keep her interacting every day, even though she no longer speaks, are detailed in my never-ending battle to prevent her shutdown.

How do I connect with my wife and get her to connect with me? This is always a constant desperation on my part especially because she doesn’t speak. I am always afraid she will stop connecting with me, especially when I get that blank look, that “daze into no man’s land. “That is the day I am trying to avoid. There are different things I do, depending on the moment and situation we are in, always taking every opportunity I can to promote interaction with her. Described in detail is how I learned to “connect” with her even though she doesn´t speak. 

Many times I wonder what she is thinking or what her feelings are because now she doesn’t speak at all. I only have her facial expressions or sounds. Is she happy? Is she sad? Sometimes I see a sad or “lost” face. When I see a straight face I try to provoke a smile or laughter just to be sure she is not sad. Does she know she is not well? Does she know how she was before? Does she remember her past? What I do to help her restore her past.

Then I realized “what about us”, our 43 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 wasn’t sure where I was in her memory or how she sees me, as her friend or husband so I felt I had to make sure she realized I was at least her “best friend.” I am still not sure how she sees me.

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 reactions have always been intuitive in my desperate attempts to keep her “connected” with me, family and her surroundings. My experiences and actions as they happen “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.

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