My Mother's Mental Illness and the Mental Health System

My mother passed a few years ago, but when she was with us she carried a diagnosis of paranoid schizophrenia. The World Health Organization has termed schizophrenia as one of the top 10 most disabling conditions in the world.

The American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM IV) states that incidence worldwide for schizophrenia remains at 1 in 100 individuals. 

The DSM-IV also states that incidence in the U.S. in urban areas tends to be a bit higher, for several reasons. Except for large urban settings in the U.S. where certain disenfranchised peoples may be misdiagnosed as schizophrenic, the incidence worldwide remains at 1 percent of the general population. This makes schizophrenia a very common illness.

I have written before about my mother, in My Mother, A Beautiful Soul, Schizophrenic and Mom, All I Ever Wanted Was You, but now I want to address how I feel about the mental health system.

The mental health system has improved greatly since my mother had her breakdown in 1960. She was 34, in excellent health, a housewife and mother with three beautiful girls, a successful husband, and a career as a lab technician. She had everything going for her. She was an artist who painted in oils and exhibited at the university. She studied languages and mandolin, she was an ardent seamstress.

She had phoned my father at work, complaining that men were in the house. My father knew immediately that something had gone terribly wrong. He brought his boss, the department chairman, at the university where he taught.

Together, my father and his boss saw what was happening to my mother. From what I was told, she was panicked at the men who were there in the house with her. I don't know if she saw them, or if she only heard their voices.

She spent 30 days in the county hospital, in the locked ward. There were no medications given, though one did exist, at that time. Every day, they wheeled her to the ECT room, where they strapped her down and fed her electrical shocks until she went into seizures.

This would erase her bad memories, they said. This would help erase some of the 'breakdown in thought control'.

After that month, she returned home. She was remote, she had changed. ECT therapy causes damage to neurotransmitters, severing connections and creating some brain damage. Her intelligence was not affected, but her daily living skills were.

ECT therapy is still used, but less widely so and is safer now. I've known of people who've undergone shock therapy for severe depression, and who've appreciated having had it. I do not agree with it, however, under any circumstances.

I've read a lot about the origins of shock therapy. One of the original inventors of ECT (electro-convulsive therapy) was horrified when he first saw what it had done to a patient. Apparently, he warned: "This must not become standard practice."

Today, medicines that help control delusions and voices help people with schizophrenia.

After my mother's return from the hospital, she went to see a psychologist who prescribed hypnotherapy for her, to examine the roots of her upbringing.

I don't know if my mother discussed her sexual abuse at this time in her life, or if, in fact what role, if any, her having been abused played in the development of her schizophrenia.

I subscribe to several psychiatric online newsletters. Most of the work done in psychiatry is devoted to helping individuals with psychosis, particularly, those with schizophrenia and bipolar illness.

I'm not impressed with how hospitals and private practitioners treat patients, however.

My mother received no medication for her illness from 1960 until 1978, when she had taken flight to Mexico, and was searching for 'a lost child,' the daughter she gave up to adoption in 1963. We had to bring her back from Mexico because Mexico is no place for an ill woman. If she had been placed in a Mexican jail, no one would have been able to help her.

We brought her back from Mexico and she was hospitalized for two weeks and placed under ant psychotic medication, Prolixin. Prolixin is very powerful. Prolixin, as a class of drug, won't prevent delusions or voices from happening, but it helped make sure she wouldn't act on them. These older anti-psychotics cause a lot of brain damage, in the form of tardive dyskenesia, which causes repetitive movements similar to Parkinson's disease.

My mother did extremely well on her medication. She took them regularly for several years before she decided she did not need them. She would then stop taking her medication, and, invariably, the delusions would return.

For her, her delusions centered around working for the government, particularly the FBI. Working for the FBI is a very common delusion for paranoid schizophrenics, apparently. My mother did not work for the FBI, but possessed a heart that cared about all the injustices in the world. She so desperately wanted to make a difference in the world.

Her delusions also centered around a complicated system of receiving 'communication' via a phone, by 'breathing into the phone.' She claimed to have had sex with Breshnev via the TV.

Her hospitalization in 1978 saw a new era for my mother. Her mind became stable enough for her to return to school (she already had a BS degree in Microbiology) to become a nurse. At age 52.  This, she accomplished.

Her life took on new meaning. Her soul brightened. She was more involved with my two sisters and myself than she had ever been. She laughed, she wrote poetry, she continued painting.

Medication had set her free.

For this, I am eternally grateful, to have experienced the return of my mother's soul. For the last 20 years of her life, she told us stories she otherwise had forgotten. She came to visit my children. She cooked, did laundry, bought gifts for my children. She loved life and life loved her.

She was ecstatic to have been given a chance to fully participate in life again. No longer was she relegated to someone whose delusions controlled her every waking moment, someone whose delusions tortured her soul, rendered her incapable of taking care of children, or, at times, even of taking care of herself.

I have read that the newer group of anti-psychotic medications does not cause as much brain damage, as the older classes of anti-psychotics. But I've also read that the effectiveness of these medications in controlling delusions is also questioned.

Recently, I've known a few young adults who also carry the diagnosis of paranoid schizophrenia. One man knows that his voices 'which seem to be from God' are not God, yet, he believes them. He knows these voices are a delusion, but no medication relieves him of these delusions.

One young woman I know is grappling with the reality that the 'voices that seem to come from out 'there' are actually coming from my mind.' These are her words, as she described them to me, recently.

Both the young man and the young woman feel stigmatized by their families. This is unfortunate. Nobody asks to contract a mental illness, a disorder of the brain. I'm impressed with research I've seen in the past two decades that describe some of the changes that occur to the brain, during the progression of schizophrenia.

How this research gets translated into what practitioners tell patients or how patients' families feel about their loved ones is not always pretty.

I've found too many practitioners still believe in older Freudian theories, such as the 'bad mother' theory of contributing to the development of schizophrenia.  Schizophrenia is complex; it is not a result of bad parenting. My mother did not have bad parenting, generally.

 Also overplayed is the genetic factor. This is the theory that states that the children of someone with schizophrenia are more likely to develop schizophrenia, themselves.

I question some of the methods used in creating such conclusions. When one looks at families with this illness (and when one finds a parent and children who also have this illness), I don't think it is possible to really separate genetic causes from environmental causes.

I don't think we've isolated specific genes for schizophrenia, at least, not yet. Environmental causes, such as lower socio-economic status (why does this illness have a greater prevalence in the U.S. among the lower socio-economic groups if the worldwide incidence is at 1 percent of the population?) cannot be ruled out.

There are so many questions left that I cannot answer. Do these new anti-psychotics work? Do they cause less brain damage? Is psychiatry treating our loved ones with schizophrenia in a gentle and professional manner? Is science advancing in its quest to discover the origins and cure for schizophrenia?  Are patients less unhappy? Are loved ones less unhappy?

For scientists, schizophrenia is complex. For afflicted patients, it is hell. For loved ones, it is a curse.