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Visiting Mom
October 2001

Mom's been in American Village for over a year now. Her particular variety of Alzheimer's makes her want to walk around constantly. I can dimly remember a time when she didn't need to move around a lot, but for at least 15 years she's been unable to sit at the table for an entire meal. At first they put her in a wheelchair, but she kept lunging out of the seat and falling down. Then they arrived at a device called a "Merry Walker," sort of like the little bounce-y wheeled chairs that people used to put babies in. She can push the thing around in all directions, and the structure protects her from bumping into things. When she gets tired she can sit down for a minute on the canvas seat. The nurses tell me that she is up most of the night and most of the day, and takes "power naps" of a few hours at a time when she's completely exhausted herself. She's lost about 30% of her body mass, but Ray says she eats well.

Last time I was there to see her, a few months ago, she didn't know me, but she liked my hair. She lists to one side or another depending on the day. When I was visiting she was listing to the left. Her eyes are amazing. There are no crow's feet or wrinkles around them, and they are a clear light green. She looks at nothing in particular, but she looks very deeply. She doesn't seem angry any more. There is one deep wrinkle between her eyebrows, as if she is always puzzled. Her skin is smooth and clear. Now that she is not coloring her hair, the silver frame compliments her face.

My stepfather goes nearly every day to see her and feed her dinner. Their divorce was final a few weeks ago. If he were to become ill, Medicaid would have gone after her estate. He was trying to protect her, and us, from that. And of course his life is not over yet. He's still in his sixties and he can still find a good companion for the rest of his years. But he is there with Mom, at suppertime every day. He lives alone with their little dog in the house I grew up in.

The other day I got a letter from an old high school friend of Mom's who had just heard about her illness. He is a retired schoolteacher now, living in Middletown, where Mom grew up. His letter was full of happy memories of her singing. His brother was her first boyfriend. The letter made me feel as though a vacant space had been filled. It made me remember that she had a whole life, and that her life is not defined by this moment.

In my heart, grief struggles with regret. I have good memories, too. She always took me walking in the woods (now gone) on May Day to pick wild flowers, and then we would make May baskets and hang them on the neighbors' doors. She taught me to love nature. Every fall we would glory in the colored leaves. Since I moved to California she has sent me a box of leaves from home every fall, until she got sick. Her uncle Herbert, who lived in Florida most of his life, would always come home to Indiana in the fall and fill a suitcase with leaves. Then he would go back and burn them in his fireplace, to have the smell of home.

I wish we had resolved our conflicts before it was too late. I wish I had talked to her about letting me be an adult, letting me visit my friends at home without emotional penalty. I wish I had talked to her more deeply about how much it hurt me for her to say, "I wish you didn't have to leave" every time I came home. Maybe there was no resolution possible. I think about my girls, teenagers now, and how I already dread the day they leave. I see how little I mean to them at this time in their lives. Invisible, like air. I understand my mother's desire to be noticed and loved and cherished by me because I have the same desire now. Every little expression - every mother's day card, every piece of refrigerator art - represents a moment when a mother is not invisible.

I wish I had gotten her to tell me more stories about her life. I have a blurred photograph of her with her brother, standing on a tennis court, as teenagers. It makes me think how little I really knew her. I know that she was hurt deeply in her childhood, always feeling second best to her brother. My father was damaged even more badly by childhood abuse. They found and tried to heal one another, but they did not succeed. I see myself going through the same patterns, but with a good deal more awareness, due in some great part to the lifting of what Alan Watts called the taboo against knowing who you are.

Since Mom went to American Village, Ray says that she hasn't mentioned home a single time. She quickly forgot about her little dog and her house. Everyone mentions how quick her decline seems to be. But our neighbor Lee told me, "your mother was covering for years." What we saw as petty, irritating behavior was at least in some part the early stages of the disease.

I wish that she could end her life. I don't think she ever has a good day. I think our society is wrong to keep us living when our minds have gone. I would not want to be kept alive, and the woman she was wouldn't want that either.

Pretty soon I will have to go see her again. I'd rather have open-heart surgery without an anaesthetic. Last time I was there, I was able to get through the worst of my feelings by practicing circular breath. That same technique was what I used to manage two natural childbirths. And so I have come to see the circular breath as the pattern of life.

Blessed be the turning of the wheel.