My intention in writing this piece is to educate people who have had no contact with the mental health care system in this country. It is also to tell the story of how a mental illness can sometimes present itself.
Although great strides have been made throughout the years to reduce the stigma associated with serious mental illness it is there all the same. Where I find it most surprisingly is in the facilities that are set up primarily to treat such disorders.
For over five years our family has been caring for a son who was diagnosed with paranoid schizophrenia at the age of seventeen. The onset of the illness itself was slow and insidious. When a teenaged boy starts to act differently or express views on life that seem foreign it is expected. When teenagers are making the transition from childhood to adulthood it is rarely a smooth ride. This was round three for us on the teen scene and we were experienced parents and ready for rebellion. We were not ready for a battle with an unknown enemy.
Imagine having a thief come into your home and steal your child right out of his bed. It really does happen to some parents and the reality is horrible. How can a parent cope with that? Now, imagine the thief coming into your home at night and taking just a little bit of his personality. Not a lot at first just enough to know that he does not seem like himself lately. Over the course of weeks and months this thief keeps coming in night after night and taking a little more each time. It takes a little bit of your child’s sense of security in his surroundings. It takes a little bit of his view on reality. This thief keeps on getting in the house every night no matter how many times you change the locks and put security measures in place.
Those security measures for us were his primary care doctor and his first counselor. After being given a diagnosis of disthymia and a prescription for Paxil we breathed a sigh of relief. Disthymia is not so bad. It is a chronic low grade underlying depression that can be managed very well with medication. Only the medication was not helping at all. As a matter of fact the medication was throwing the door wide open for the thief to come in and really get to work. Paxil increases dopamine in the brain and dopamine is not what you want to increase when reality is slipping away. Too much dopamine increases hallucinations in a person with schizophrenia. As our son was spiraling down the counselor called my husband in to inform him that he was not spending enough quality time with our son. What does a father think when he hears that he may be to blame for a baffling illness? I can tell you what a mother thinks. For a split second I thought selfishly, ” thank-god it is not my fault”! As it happens in the end it really was. I have bi polar disorder type 2 and my precariously balanced brain chemistry is very hereditary.
After a few months we withdrew our son from the counselor because he wasn’t hearing us. I would bring in pages upon pages of poems that our son had written that were so unreal. They clearly gave anyone who would read them or study them some insight into the inner workings of a mind in turmoil. There were incredibly intricate pencil drawings also that seemed as if they were the works of a genius if the content had not been so disturbing. The doctor actually congratulated us on having such a talented son. That’s when we quit him. He couldn’t see what was right in front of him and although we were starting to suspect that this was more than disthymia we still were at a loss.
Then, obvious paranoia set in as it will when a person has schizophrenia. Our sons thief began to follow him around now day and night. Bold as you please not caring to be cunning and sly anymore. I recall with such clarity a particularly painful summer night. My young daughter and I were watching T.V. and my son was heading off to bed early. As he was ascending the stairs he froze and turned to look at me with such pain in his face. I asked him if he was alright. He said, “mom, did you call me a freak”? ” Oh God, my mind reeled, “no, of course not honey, I would never call you that”. He went to bed. I kept thinking, ” what is this,? I know what this is, but it can’t be, no, it isn’t, I won’t let it happen”.
Then, it just did. I forced him to go to school and he begged me not to. “If I could just keep him going until this passes him by he will be alright.” That is all I was thinking about. Until, the afternoon of that day that I made him go to school. I called him from work when I knew he had gotten home and I asked him how his day was. It was the only time he every cried. He told me he didn’t have to tell me because I knew what he was thinking. “How could I know that”? I asked him. He said, “everybody knows that’s why I don’t have to talk anymore”. He had tested this theory at school that day and in his mind he asked the boy in front of him if he could hear him. He told me that he did this over and over again until the boy turned around and answered him. The boy said, “I can hear you and the other voices too”. That’s when my legs went out from under me and I could no longer stand up. I literally knew in that instant that he had schizophrenia. I told him I was coming right home and to please stay there. Then I called his primary care doctor and told a nurse I needed to speak to the doctor urgently. After relaying the conversation word for word to the doctor that I had just had with my son he told me this. “Mrs. Moreau, your son is very sick”. “You need to pack a small bag and take him to the E.R. right now for a psychiatric evaluation”.
After all these months of recieving psychiatric care from a trained professional. I am told that my son needs a psychiatric evaluation. As if every Tuesday night previously for four months we were going out to a picnic! So, after it was discovered via a blood test that he ingested too much opiates and most likely did try to commit suicide we left our local E.R. and were referred to a larger hospital with a psych ward. This hospital had a lock down unit and we were told it was where he needed to be at that moment. My husband had to sign him in even while our son begged us to please take him home. He felt better he said. He was fine now he kept saying. All the way home we kept saying, “at least we know he is safe there’. Ten days later he was booted because insurance only covers ten days of psychiatric evaluation. He was spitting small chips of teeth out on the way home because the Haldol that he had been on caused him to have severe, uncontrollable jaw spasms. At our insistence we told the nurse under no circumstances was he to be given that drug ever again. Even when she said the doctor had ordered it I had to tell her that he had to unorder it because I said his teeth were breaking.
Finally home again, we waited for Risperdol to do it’s magic. It magically put my son into a semi coma as he slept almost sixteen hours aday and gained eighty pounds in the first year. Then his new doc added Abilify to the mix. After that addition he needed to wear diapers at night. He was on three medications that made him obese, incontinent, incoherent and he still had auditory hallucinations and paranoia. Somehow, he did manage to graduate from high school through an alternative program but it was very hard for him to go there.
Little by little we stopped being afraid he would kill himself. Little by little we got used to living with the thief and began to understand and learn as much as we could about schizophrenia. We told people about schizophrenia and how it became a part of us all. Some of our friends disappeared and some drew nearer. Most of our extended family has remained very supportive and understanding. A few were critical about our decision not to institutionalize our son. By that I don’t mean send him away to live but to put him into programs designed to help the sickest people. I am not saying that I did not want my son to be one of “those” people in the group home.
I just knew from seeing the varying degrees of schizophrenia that he was somewhere in the middle range on the sickness scale. He was not so far out of touch that he talked out loud to himself or rocked back in forth. He was sick and he was scared but he accepted help. He always trusted us to make decisions for him with his doctors. He never stopped taking medications no matter how difficult the side effects were. It would bother me so much when someone assumed he had violent tendancies because of his illness. That was so far from who he is or ever was. If anything this illness has made him more compassionate and caring. More concerned about others feelings. He used to apologize for being so much work for me. I finally had to come out and ask him what he was really trying to tell me. He said he was affraid that taking care of him would eventually be too much for me and he worried about that. This young man who battled such internal turmoil could still step out of that to consider how I was holding up. So, it was because of his intelligence and his ability to acknowledge and understand that this was indeed illness and he couldn’t always trust his perceptions that spurred us on to seek out better care for him. We finally found it in his fourth psychiatrist and a medication called Clozaril. She told us that she was not surprised that he was sleeping so much and incontinent. She withdrew the Paxil and told us why as mentioned above. Also, she slowly withdrew Risperdol because it never did a thing in the first place. Then she added Geodon and a smidge of Lorazapam to help with anxiety.
A new doctor, a new drug cocktail and a new outlook on life. Our son has become more like himself in the last couple of years. He has emotions again. That, “deer caught in the headlights” look has left his face. He communicates with us all the time now about what he thinks about and how he feels. He has lost over fifty pounds and he quit chain smoking. So, when we found out this doctor was leaving the clinic where he was getting all of his care. We abdicated with her under cover of darkness. The institutionalized way of treatment that the clinic provides did not allow for him to continue to get his meds there if he had an outside doctor. We had to choose between a doctor that got our son up off the couch, walking and losing weight, while quitting cigarettes and sleeping in boxers as apposed to diapers and a clinic that at best provided an easy way to get his meds.
I always told that doctor that if she ever tried to leave I would stalk her and sleep on her doorstep until she took in our son as a patient in her private practice. I did and she did.
So, now our dilemma is this. In order to get his Clozaril he has to have specific bloodwork done before he can fill his prescription. There is a very rare side effect that has occured with this medicine and it can cause a rapid decline in white cells that can leave a person so immune difficient that death can happen if not caught early. At the clinic the blood work was done and on that day we took home a bottle of pills. In private practice the doctor has to fax a lab order to a lab. The lab has to draw the blood, perform the tests and then follow the faxing instructions. The faxing instructions are to fax a copy to the doctor and the pharmacy at the same time. The pharmacist cannot fill it unless the bloodwork is normal for the patients own safety. Here in lies the rub. The lab has consistently failed to fax the labwork at all by day three. I was told that it only takes twenty four hours to complete the testing. The lab technician herself told me this as I told her I was worried it would be held up.
As we are about to celebrate July 4th and all that it means to us as a country, as the home of the free. Why is an american citizen not allowed to choose a doctor in private practice that has made such a difference in his life without paying a high price? Why would this country choose to corral mentally ill people into clinics where all the care is absolutely managed with very little choice? Especially if the patient has a willing family that will love and support him. In actuality taking a burden off of an overtaxed medical facility. Why can’t he access just a part of the clinic that works for him and reject as a free person a part that doesn’t? In the three years that my son had been recieving services at the clinic he had at least four counselors. No one stayed long enough to remember much about him. Each one sat with his file on their lap and asked questions that my son had answered a hundred times. There was no moving forward. He would go in and choose a number just like at the deli. After that he would go through a door that automatically locked and he would disappear down the hall. There he would wait in a large room where there were long tables. Everyone sat there until there number was called. Then they would get weighed, have their blood pressure checked, have their blood drawn, get their bottle of pills and go home.
If they were part of the large population that got taxied in from a group home sometimes they would wait for over an hour for the taxi to come back to take them “home”. How sad it was to see an ill person, nervous, shaking from the cold and knocking on the glass to get the receptionists attention. I do mean knocking too because many times the receptionist had a way of not bothering to look up when a person was standing right there in front of her. After knocking I would hear a small voice say, ‘could you please call my ride again because it is so cold out and they didn’t come yet”? In answer often, “well, I already called give them a few more minutes”. Eyes cast downward the person would back away mumbling….’okay’. My son got two rides there by taxi because the counselor thought it was best to foster independence. I thought it would foster more feelings of abandonment and paranoia after witnessing that. So, I opted to drive him in and out. On a few occasions I opted to go up to the window after someone had been asking repeatedly for a ride home. It’s funny how when a person looks pretty together on the outside and has her hair combed and is in ironed clothing that glass window practically flies open by manicured nails attached to the long arms of the taxi law! Oh yes, I did but nicely. I just pointed out that it seemed a bit harsh that a person had to wait almost an hour to get home when they were already taxied in an hour too early followed by an hour until their number came up. Three hours is a long time to be somewhere stressful when a person is dealing with a serious mental illness. Usually I got a look and occasionally an eye roll but I always got that phone call. Maybe little victories here and there is the best we can hope for when surviving with a mental illness but I am not satisfied with that. I want to win the war.
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