An inside look of 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 deepest feelings on paper not only helped me alleviate my emotional pain but helped me sort out how I was going to act differently the next day. Keeping up my diary helped me make new decisions on how I was going to react to her continuous behavioral changes. Soon this diary turned into this book. Hopefully, others living this same reality can benefit from my shared experiences.
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.
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, her friend or her husband. I am still not sure how she sees me.
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.
My experiences and actions in real time “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.
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