If I could describe in one word the feeling of being a person with schizophrenia and being a parent of a child or young adult with schizophrenia, it would be “helpless”.
No one involved knows what’s going on. We turn to the professionals, Amen Clinic and psychiatrists known for being the best in their field. We unknowingly are asking for guidance and involvement, but receive nothing but diagnosis, hospital admittance and medication orders. Neither the patient nor the parent become informed and involved in their treatment. “Only keep taking the medicine at set dosages and times; if you see anything abnormal, take the side effect medicine”, we were told. I don’t know now how much counseling or education my son received in his sessions about the side effects from anti-psychotics and how to work with them. I doubt much, because when he began to experience them, he became more and more isolated and refused to see a psychiatrist, and wouldn’t talk to us, his parents. He seemed ashamed, like it was his fault, and became severely depressed.
It’s only now, on the other side of my son’s suicide (1 1/2 years ago), that I can breathe and realize how pathetic our experience of medical treatment really was.
When we, Marco’s parents, heard of B.E.A.M and spoke with Dr. Mackliff on the phone and later in person, he spoke from the very beginning about the importance of family support, both before the B.E.A.M surgery and afterward for a year or more. That was the first time I heard of the importance of the family in treating the disease and supporting the family member with the disease.
It was encouraging to learn about a new treatment model being tried at New York State Mental Health, directed by Dr. Lisa Dixon, that focuses on those who’ve experienced their first psychotic break and involves the patients in their treatment plan; which drugs to take and how much; what the patient wants to achieve with medication; their concerns about side effects like gaining weight and loss of sexual abilities; and how to minimize those with the medication. The program tends to use the simplest meds at the lowest dosages. The program also provides support for the family and help for the patient to achieve his life goals, school or employment. The patient also receives psycho-therapy; something that both of the psychiatrists that Marco saw said, “didn’t work with schizophrenia”.
This is a big step in the right direction. We never received any guidance or education on understanding what our son might be experiencing and how to help him. NAMI, the National Association for Mental Illness, has the responsibility for supporting and educating family members. Unfortunately 58% of the organization’s funding comes from pharmaceutical companies. Parents are counseled to basically make sure that your child keeps taking the meds. I knew almost nothing about the incapacitating side effects my son was experiencing. None of the other parents at the NAMI support groups I attended, knew either. The side effects were considered the same as the disease. They all described their young adult child in the same situation: staying in their rooms, unkempt, non-communative, gaining weight, non-social, paranoid and depressed. – Isolated.
Dr. Mackliff worked with the families of his patients to get them to reinforce appropriate thinking and attitudes, and actions in their children’s lives and activities after having the B.E.A.M. surgery. Although the symptoms stop often within days of the surgery, there are old cognitive patterns and emotional behaviors that continue to reinforce the illness and can cause relapses. The families need to work together with their child to bring him or her back to a life worth living.
Now that I understand so much more about the disease schizophrenia and the antipsychotic drugs used to treat it, I am fully prepared to support my son, but unfortunately, it is too late. I have written a book, the Tip of the Iceberg – a Toolkit for those with Schizophrenia, which will be published this spring. In it I have shared all of the knowledge and experiences I have acquired both during my son’s sickness and after, from research at UCLA Biomedical Library and from interviews with Dr. Mackliff in Ecuador. It will be available for purchase on my blog site once published.
I offer all of my support to parents with children with schizophrenia now. You can email me at firstname.lastname@example.org. You can also email Dr. Mackliff at email@example.com to learn more about the B.E.A.M procedure. He will respond almost immediately. He is a compassionate and humane doctor who is interested in helping people with schizophrenia, not making exorbitant and obscene amounts of money like the U.S. psychiatric profession and pharmaceutical industry.
He told us at the very beginning that “Things change very quickly with schizophrenia, and that we should postpone his entry into the university for one year and have the B.E.A.M surgery done as soon as possible.” Dr. Mackliff was right. Please read the testimonials from parents and patients who have had the B.E.A.M surgery on http://www.beamprocedure.com.