Tuesday, December 29, 2009

Why parents need to get and stay involved

Recently I have been mulling over why parents need to be very involved in helping their adult children overcome the crisis of schizophrenia. There are so many reasons why it is harder to help an adult than a young child but these are excuses. The most often cited reason parents give is that the person won't accept help. Depending on how you feel about it, you can either respect the choices of the person undergoing the crisis to allow him to remain in the crisis without active intervention on your part or you can believe that it is the parental duty to take over when that person is not able enough to make wise choices. Speaking as a parent, I favor the interventionist approach.

As parents, by having children we signed up to lifelong commitment of caring, which doesn't end magically at the ages of 18 or 21. We are still the adults here, to help guide our children through young adulthood, which these days seems to last well into the third decade for a lot of people and much longer for some.

Choosing to be an interferring parent is tough but it is far easier than being a helpless bystander as the years go by. It means that most likely you will have your adult relative living at home with you as the only way to exercise some degree of control over the situation and to demonstrate by actions not words that he is she is secure under your roof. Adult children living with their parents doesn't go down well in certain Anglo-Saxon cultures, paving the way for life on the street and a reduced chance to ever get well. Hands-on parenting means that sometimes you have to be in the bully pulpit, sometimes on the side of forcing meds compliance and/or sometimes forcing a vitamin regime or other interventions that you feel would be beneficial. Then there is the social responsibility of the parent to not allow their adult family member to victimize the wider public and at the same time to protect him or her from becoming a victim. Your child is no one else's responsbility but your own when it comes to protecting others. If you can avoid an unfortunate social outcome without resorting to meds, great, if not, insist that meds be used sparingly. If you are a parent who sees medication as the final answer, then you are not doing justice to your relative.

My job was made easier by becoming an informed interferring parent while still preparing for the day for Chris to assume control. This inevitably led to a clash with the medical profession over the use of the medication and the role of therapy. Just because the medical profession is stuck in an outdated paradigm when it comes to schizophrenia doesn't mean a parent has to be. And, when the doctor who is treating us has had schizophrenia him/herself, then we'll talk. Until then, parents and child are the real experts. What the doctor brings to the table can be useful, but it is also imperfect. Always keep in mind doctors' claims that people with schizophrenia who get well often aren't good patients and that they have a supportive family.

In my personal experience I spent several wasted years wallowing in the misery factor. We owe it to our relative to become relentlessly optimistic and cheerful in the face of obstacles, which are many. There is no point feeling sorry for ourselves and them. Being sad doesn't help your relative see a positive way out. It sends off all the wrong messages. You will never get out of this, for one. You are damaged, for another. "I" prefer being miserable to "your" getting better is another one.

What the medical profession hasn't done is to reveal to its clients that well-known "secret" that the crisis of schizophrenia is an understandable human condition, and that's a problem. If more people were exposed to the idea that schizophrenia is an understandable, albeit somewhat unusual reaction to life's pain, it would make the task of helping your relative through it so much easier. There are psychiatrists who have been saying this for years, but their message has been stifled by the greater number of medical professionals and researchers who are funded directly or indirectly by the pharmaceutical industry. Parents should be positively reinforced by medical authority figures when their own strength begins to wobble, not gently dissuaded of the foolhardiness of their beliefs.

As a mother I felt quite hopeless in the face of grim doctors telling me that my son has a lifelong brain disease. Nothing can be further from the truth, but I had to find that out for myself while the medical profession continued to enrich itself pursuing research grants from pharmaceutical companies rather than bringing Jung to the table and illuminating others. It has turned its back by and large on helping parents like me believe in ourselves and in our children, that we have something to offer.

Once you begin to understand what your relative is going through it is a journey, not an ending.

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