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
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
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.