Losing One Ability at a Time

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 CHAPTER 2

The disease progressed gradually at first. My mother began wandering. She would drive to a store and then call me because she did not know where she was. I would have to go out and find her.  Eventually, I took away her car keys. "Mom, we can't keep doing this," I told her. "You could get hurt or become lost. It is dangerously hot outside during the summers here." 

She also began wandering around the yard. Neighbors would come to the house and tell me they had seen her walking around outside, confused. I installed locks near the very top of the doors, where she could not reach them, and did everything I could to keep her safe and occupied inside the house. Then she began losing her abilities one by one. At one stage, she became afraid of mirrors. She would look into them and see a little girl or other people standing on the other side. She held complete conversations with the people she believed were inside the mirror. To keep her from becoming frightened, I covered the mirrors in her bedroom with wrapping paper. 

Then she forgot how to shower. She came to me and said, "I don't know how to take a shower." At first, I felt embarrassed. We may see our mothers undressed when we are children, but it is very different when we are grown men and suddenly have to undress our mothers, bathe them, and care for their most private needs. But she needed me, so I helped her. Soon, she could no longer find or properly use the toilet. I had to guide her into the bathroom, explain what the toilet was, help her sit down, and wait with her. One day, she came down the hallway holding feces in her hand. She had no understanding of what she was holding or why. I did not shame her. I simply said, "Mom, let's go to the bathroom. This means you may need to use the toilet." I guided her there, cleaned her, and made sure she was comfortable. Then she forgot how to eat. She would pick up a fork and hold it in her hand without knowing what to do next. I placed my hand over hers and guided the fork toward the food and then toward her mouth. "This is how you do it," I told her. But she could not retain the instruction. A few moments later, the knowledge was gone again. That was when I realized I would have to begin feeding her. 

Her decline did not occur in a smooth, predictable line. She would remain stable for a while, and then suddenly there would be a dramatic drop. It sometimes seemed that she would lose an entire ability overnight. Each time she lost something, I grieved. I also became angry. There were moments when I would say, "Mom, just pick up the damn fork. Put it in the food and bring it to your mouth." I was frustrated, exhausted, and terrified. But I quickly realized that none of it was her fault. I had to change the way I thought. This was not the mother I had always known choosing not to cooperate. This was a disease taking pieces of her away.  I even tried getting her to draw, as she was an artist so thought this would be theraputic for her.  To my surprise, she had forgotten how to draw and paint.  A 20th century master artist reduced to scribbling.  One day while sitting on the couch, she picked up a pillow and started to look at it as it were a canvas and began drawing on it with her finger.  I would film these incidents in order to learn from them and to show her Doctor.

Eventually, her speech also changed. Sometimes she could speak clearly, but at other times her words came out as complete jumble. I could not understand anything she was saying. I decided not to correct her. I did not tell her that she was speaking incorrectly or that she was not making sense. I allowed her to talk. When I recognized an occasional word, I repeated it back to her and responded as though we were having a normal conversation. To me, the words were incomprehensible. But to her, it appeared that she knew exactly what she was saying. She was expressing herself, and I wanted her to retain that freedom for as long as possible.