Preventing Her Shutdown - Losing My Wife To Alzheimer´s by Sammie Marsalli

Preventing Her Shutdown - Losing My Wife To Alzheimer´s by Sammie Marsalli

As an author this is my first attempt to write. 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 and I am trying to not let go and avoid her shutdown. Writing a diary about the events of the day and expressing my emotions on paper not only helped me ventilate my deepest feelings but helped me sort out how I was going to act differently the next day. Keeping up my diary helped me make new decisions and analyze what I was doing wrong.

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. Professional help inside a family simply doesn´t exist as there are no two profile behavioral changes alike with Alzheimer's. 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. Soon this diary turned into this book.

Does my wife know she is not well? Does she know how she was before she was diagnosed with Alzheimer's? Does she remember her past? Then I realized "what about us", our 43 years of marriage, does she remember that past? She recognizes me 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. I am still not sure how she sees me. There are moments of a long hug or a not letting go of my hand, her special smile that tells me she knows she is my wife.

The real scary moment for me is when she wakes up in the morning and I greet her, she stares at me as if she doesn't recognize me. There is a gaze and no "connection". Now I am desperate. I ask her "do you want a big kiss or small one" and she sometimes gestures a small one. If no answer I just kiss her anyway and she responds with a smile, now I am "connecting". I pray that gaze of no recognition in the "wakeup" never lasts forever. "Please God, don't let her go into Neverland."

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." When this happens I never show my “real panic” and always act as if everything is normal. Is she losing it? Described in Preventing Her Shutdown is how I learned to "connect" with her when I get that ""blank look"", understand what she is thinking and what her feelings are, even though she is silent. More importantly, detailed is how she has learned to reach out and connect with me to communicate.

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, never. Loneliness is synonymous with depression and sadness.

On the other hand, being a caregiver for my wife is a very lonely journey. No matter what the family support you have or friends you have to reach out to, this is a very lonely position to be in. Loneliness is not only physical, it is also emotional. I feel lonely almost every day and writing became my “silent partner” to alleviate the emotional pain. I can't really explain this well but I just felt relieved after writing and not so lonely. My screen seems to be a person I am talking to.

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, and my very personal unloaded emotions never confided to anyone, are detailed in my never-ending battle to prevent her shutdown.