For About and By Caregivers
Ghost In The Family Room

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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