Many have said that schizophrenia is a family disease. That’s because it can profoundly affect the lives of family members. Carol Anderson, Douglas Reiss and Gerald Hogarty wrote a book in 1986 entitled Schizophrenia and the Family about this very topic. They were some of the first researchers and clinicians to articulate the way in which schizophrenia affects a family. They even designed a therapeutic psychoeducational approach to treating schizophrenia that included the family and not just the person with the illness. Their approach transformed the way in which schizophrenia was treated. Relatedly, the National Alliance on Mental Illness (NAMI), one of the largest family oriented advocate groups in the nation, arose out of the struggle for families to cope with the devastating effects of schizophrenia and other mental illnesses. There is no doubt that it’s a struggle for family members as well as for the individual living with the disease.
Children whose parents have schizophrenia have their own unique challenges. They might have to witness psychotic episodes which can be very frightening and confusing. Some have to see a parent being carted off to a hospital, handcuffed and dragged out by the police or paramedics. All of these experiences can leave children feeling lost, afraid and even angry.
You mentioned you watched your mother “slowly fade away” because of schizophrenia. She had problems taking her medication. You also said that you have spent a majority of your life being angry at her for having schizophrenia as well as feeling that you could have done more to help your mother. Your two primary feelings related to this ordeal seem to be anger and guilt.
Your feelings are understandable but are they accurate or justified? That depends. If you are angry because your mother had schizophrenia and thus you had to essentially live with it then your anger may be justified. But maybe anger isn’t the right adjective to describe how you feel. Maybe you’re not angry but sad. Growing up with a schizophrenic mother had to be challenging. It’s not fair if your childhood was derailed or interrupted because of the disease.
Are you angry because your mother did not take her medication and thus could have prevented or decreased the symptoms of schizophrenia? If so, know that this is a common reason why family members feel frustrated and angry with their ill family member. Here is a fairly common family scenario: A person has symptoms of schizophrenia. There are medications that have been proven to decrease or eliminate psychotic symptoms and thus prevent future relapses, subsequent hospitalizations, etc. The family feels that person with schizophrenia should realize that there are medications to prevent the horrible symptoms of the illness and logically, take the drugs. But the ill family member doesn’t see the connection, doesn’t take the drugs and then they relapse. Often the person with schizophrenia doesn’t take the medication because they feel they do not need the drug because they’re not ill. The ill family member reasons “why should I take medication when there’s nothing wrong with me?” The family absolutely knows there is a problem and tries to explain to the ill family member why the drugs are needed. After explaining over and over why the medication is needed to their loved one, their loved one still won’t take the medicine. This understandably aggravates the family. The family comes to see their ill family member as the problem. They won’t take their medications and thus they are causing all of these problems. The person with the illness is then seen as the “bad guy” essentially causing all of the family’s problems because of their refusal to take their medication. The family may begin to feel there’s little they can do to change the outcome. Many families in this situation feel helpless. It can drive a family apart.
Relatively new research has shown that it’s not that people with schizophrenia deliberately refuse to take their medication simply to aggravate their family. It’s that the person with schizophrenia in many cases is unable to recognize that they are ill. They literally are oblivious to the fact that they are ill. It’s a condition called anosognosia. Approximately 50 percent of people with schizophrenia seem to have this condition. This means that almost half of the people with schizophrenia have an inability to recognize their illness.
My point with this explanation is that your mother may not have been able to recognize her illness. It’s understandable if you are angry with her. Many families too become angry with their family members when they refuse to take their medication. But it’s also important to consider that your mother maybe one of the 50 percent of individuals with schizophrenia who can’t recognize she’s ill. Being aware of this new knowledge may not make it any easier to deal with your mother. But it at least provides an explanation as to why she might have had difficulty adhering to her medications.
As for being angry at yourself, please understand that there was nothing that you could have realistically done to stop or prevent the disease. Schizophrenia is principally a brain disorder that requires medication for treatment. As a child there was certainly nothing that you could have done to affect the disease. You did not cause your mother to be sick. Schizophrenia is one of the most difficult illnesses to treat. It’s not fair nor is it realistic for you to blame yourself for your mother’s condition. I’d like to know more about why you feel this way. But even without knowing why you feel this way I can say with confidence that you should never blame yourself for the disease.
With regard to having children, there is an increased chance that your children could develop schizophrenia but it’s negligible. It should not deter you from having children. Schizophrenia is thought to be caused by a combination of factors including hereditary factors but environmental factors also play a large role. Generally, if children are parented by healthy individuals and raised in a safe, loving environment, schizophrenia or any other mental health disorder is an unlikely outcome.
Lastly, you asked how you can help your mother when you’re not privy to all of the facts of her care (I am assuming this is due to privacy laws). The best thing you can do is to try to rid yourself of anger and guilt. Realize these feelings can be poisonous to your life and spirit as well as to the relationship with your mother. They are also probably misguided. It’s reasonable and understandable to be saddened by a life interrupted by schizophrenia. The toll schizophrenia takes on the lives of individuals with the illness and their family is tragic and underestimated. But your mother is still alive. If you are able to still visit her, be with her when you can. Try to enjoy the time you spend with her even if while you’re in her presence you feel that she’s not quite “there.” At some level, she is still “there.”
This article has been updated from the original version, which was originally published here on February 9, 2009.