Today I am a bit overwhelmed. Alzheimer’s disease has taken away my mom’s judgement. It has taken her ability to complete simple tasks, (whether because she has forgotten how to run the microwave or she is unable to stay focused). It has taken her ability to sustain or remember a happy interaction with another person. But it hasn’t taken away her needs. She needs to eat regularly, she needs to feed her soul with friendships and relations, she needs to do something to keep from being bored (and thereby not find herself in trouble–remember the lack of judgement…) But addressing these from afar… Making all the decisions for her–especially the big ones–is she safe enough, is she suffering more being alone or moving to a new environment, is she eating enough, is she as ok as she can be given the extent of her disease and her losses.
I could base my decisions on what I would want, but I somehow feel that wouldn’t be right. My mother and I are two very different people. As Alzheimer’s has taken away her voice, I have to try to remember decisions she has made in the past and make my decisions now based on hers.
I see my son starting to develop his own voice–though sometimes it seems he takes a stance opposite of mine, just to be oppositional… It is a wonderful, if not occasionally trying, process. He is taking out voices on trial runs, often with some pretty funny results. He’s only 9, so he has a long time to go before his voice stands strongly as himself. But with mom, I’ve seen the loss of her voice. Looking back, it has been disappearing over the last 10 years or so. I thought it was diminishing due to isolation on a small farm in rural Missouri and my parents’ own stubborn independence. But I suspect now that some of that was compensation for a slowly progressive loss of memory. I can see it now. Instead of drawing them out, I left them alone. Well, in my defense, both my parents could quickly squelch any attempt to get them to expand their horizons. “What the hell do you know, you’re just a kid.” (a 48-year-old kid)
But now mom’s voice is practically gone. Dad made all the decisions for her. Told her what to do. Again, I misjudged. I thought he was becoming even more overbearing than he had been before. But he was doing his best to keep mom “the same,” to keep her on track, to deny the changes in her by fixing everything for her. Now that he is gone, mom is devastated by her inability to carry through a day. What should she wear? What should she do? What should she eat? And just forget about the bills, changing lightbulbs, or any of the thousands of things we put on our ‘to do’ list and eventually check off…
Now that sounds simple. Just tell her what she needs to do. HA! YOU try to tell her something. So, I have to remember her voice, try to make decisions based upon her past, then try to maneuver so that she thinks she isn’t being told what to do. And it feels like my wavering voice is all alone.