By Diane Glass
People struggle in life and there are a
wide range of problems one can be born with, self-inflict or
adopt. Some are rare problems, some are extremely common. I
have what I consider to be a problem that falls in the rare
category.
A ghost lives gently in my family room.
I’ve known her all my life. She moans softly to herself. She
doesn’t scare me anymore. I’ve grown accustomed to the sound
of her haunting sighs, repeating phrases.
My mother has schizophrenia and lives
with me, my husband and our 16-month-old daughter.
Schizophrenia is a profound disruption in cognition and
emotion, affecting the most fundamental human attributes:
language, thought, perception, affect, and sense of self.
The array of symptoms, while wide ranging, frequently
includes psychotic manifestations, such as hearing internal
voices or experiencing other sensations not connected to an
obvious source (hallucinations), and assigning unusual
significance or meaning to normal events or holding fixed
false personal beliefs (delusions).
My mother is not the mother I once
knew. Rather, she is a ghost of herself; a rough photocopy.
I prefer the ghost. The mother I grew up next to was not so
gentle. She was terrified of many things and thus
terrifying. My father was loyal and he cared for her
throughout the rollercoaster ride of her illness, almost
right up to the end of his own struggle with Alzheimer’s
four years ago. Over the years, her severe symptoms have
steadily fizzled.
“Severe symptoms” sounds so kind. I
think she was tormented by the most frightening and horrific
demons a brain could manufacture. I think she was, but I can
only recall how it looked through my own eyes as a child. I
know to her the hallucinations she had were very real.
I spent one afternoon huddled in the
hallway next to her as she clutched a large kitchen knife,
protecting us from a killer outside. I was five. My father
was outside mowing the lawn and I remember he had to bang on
the front door to ask her to unlock it. I remember, against
her command, I unlatched it for him. He tried to convince
her that there was no killer, but it was a fruitless effort.
She had already called 911 and the police were at the door
within moments. The police walked through the backyard and
around the house, then reassured us there were no
trespassers.
As the events unfolded at Virginia Tech
recently, I sensed the haunting fragments of a picture all
too familiar being painted before me with each news clip.
The video clips of Cho Seung-Hui - angry, incoherent, and
delusional – were clearly of a schizophrenic or some
variation of a severe and diagnosable disease. With all of
this fresh and our recent move to our new home, I have been
afraid that neighbors would associate my mom with someone,
capable of violence similar to the massacre at Virginia
Tech. Thus, it has become my little secret, again.
I
spent many years angry at my mother for her disease, and
then angry at her disease, and then, for a time, angry at
science for not doing more to unravel the mystery, causes,
and cures. Now I feel saddened and a little hopeless and
very much alone. I experienced 17 years of bliss living
independent of her while my father cared for her and then,
after he passed, while she lived nearby in a condominium.
But I can no longer say it is appropriate for her to be
alone. Her doctor finally guilted me into putting her into
assisted living. Unfortunately, when I did so, she jumped
from a second story terrace and broke her leg—and the money
just poured out of her account with me signing the checks.
Thankfully, my mom is not willful; she just wants to be able
to watch TV and is especially happy with “Dancing with the
Stars.” We were able to purchase a home together with the
sale of her condominium—much more than we could afford on
our own as a single income family. Here we are, in a
prestigious neighborhood with a dirty secret.
Some days, I just want to run away.
Other days, I am kept afloat by the stories and knowledge
that I am not alone derived from the online community. I
think it has finally come time that I reach out for some
support because it seems it is no longer enough just to be
heard—I need the comfort of hearing others.
Diane Glass is a caregiver for her
mother who is living with schizophrenia.
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