My heart beats too fast and my hands shake when I think of the hospitals, the doctors, the pills, God… the pills! Writing now causes my guts to feel like they are being ripped apart. What if I made a mistake?
What if I made such a huge mistake that my only and most beloved son shall never forgive me? And if he does forgive me has my mistake(s) ruined some of his life already? Has it already carved out part of who he is?
Dear God I just don’t know what is right. So I shake and I cry and I don’t know what to do.
Join a group? Does anyone in a group care that it is my son and his life that I care about and not the intentions of some group? It is my son! It is his life!
I care more about my son and his life than I do any group’s intentions, any philosophy, any “evidence-based,” treatment, any doctor’s opinion and truly, I care more about his life than anything I can think of!
“Forget his liver,” the psychiatrists have said in a way as to suggest I am neglecting my son by not neglecting his liver.
“We can treat liver disease, diabetes and Tardive Dyskenesia,” the young psychiatrist said, “but we can’t treat schizophrenia without anti-psychotics.”
That part about treating liver disease, well, I don’t know how they treat it!
My son’s liver panel always changes when they give him anti-psychotics. His MD told him, in front of me, “to never take anti-psychotics again.” Several psychiatrists said I should, “fire him!”
“You must go against your gut. You must abandon everything you understand as a mother in making the decision to advocate for forced injections,” I was told by a well-respected social worker. In her next sentence though she added that if she was a parent then she did not know what she would do in my shoes.
“We’ll commit him to a state institution for not taking medicine and keep him there until he gets so tired of it he will do anything to get out, even accept regular injections of anti-psychotics. We’ve had to do this many times with patients like your son — who are consistently non-compliant in taking their meds,” his psychiatrist has told me about three times and this is a quote I will stand by.
We have only one state mental institution right now seen fit by the government to admit patients. (Medicare and Medicaid usually pays for persons with a severe mental illness to be hospitalized, or rather, institutionalized). The beds are not full at this hospital because we don’t have enough psychiatrists to meet the needs so the hospital cannot function at full capacity.
“He wouldn’t have any rehabilitation there,” I told his psychiatrist after she last threatened to send him there if he, “made one wrong move.” She was angry because the day before my son had gotten out of a car in town instead of going to his apartment, while riding with one of the team’s social workers. He is an adult and can get out in town if he wants to whether anyone likes it or not.
She hasn’t had a clinical visit with him in over a year, but has the power to lock him up indefinitely without any sort of rehabilitation, other than huge men doing whatever they must to get him into a position for an injection and she is willing to do this if my son behaves in a way that she simply doesn’t like.
“The only thing he would be able to do up there since the psychiatric rehabilitation unit is full would be to sit in that community room all day watching television with patients who are much worse than he is,” I told her and she reminded me again that this was an effective technique to get some patients to decide to take medication.
I am a mother! I feel like I’ve had to give my son over to the enemy. I feel like I agreed to join them too — and I did. Never whole-heartedly, which is why I must have always felt different, as if I was on the outside looking in. I’ve had meetings with psychiatrists who stared at me like I was in a Zoo and I don’t have a problem with paranoia.
I guess me having an opinion, especially when it is different than theirs is, my willingness to walk into a meeting with the notion that we are equals, along with the fact that I have in the past written complaints that were investigated, causes me to be something akin to an exotic animal, without the respect.
I have attended events with some wonderful people but who all seemed to agree on something that rips my gut apart.
Now, I sit alone, wondering what to do. I stopped going to the support groups because every person there ultimately supports complete and total denial of a person’s basic human rights.
I once told my son’s psychiatrist about studies suggesting people who have schizophrenia could actually get well. She had not heard about these studies nor had she ever read anything about treating schizophrenia other than with the use of anti-psychotics. More than twenty years of being a psychiatrist and not once has she even considered taking time to read about other forms of treatment! I found this bewildering.
I cannot write well thinking of all of this but I cannot continue not speaking out about it. I’m glad my keyboard is strong ’cause my shaking fingers are hammering these keys!
Today all is quiet on the home-front. Nobody is delusional. Nobody is so depressed they want to die. Nobody is saying he or she believes in fairies or angels or that one can talk to God. Nobody is saying that our laws are wrong. Nobody is asking for fifty-cents for a cup of coffee!
I know however that it is only the moment I can live with. I cannot live with what might happen next. Well, actually I can and am living with the somewhat predictable unknown, but it gives me great anxiety and emotional pain, so I try to get by one minute at a time.
“What causes schizophrenia?” somebody asked the famous psychiatrist who came to give a talk at a meeting I attended.
“Nothing,” the doctor replied. “Nothing and everything causes it.”
He went on to discuss how we don’t know very much at all about schizophrenia. Scientists believe it might be, “one-hundred or more different illnesses.” For one person it could be a brain allergy and for another it might be an autoimmune disorder.
We know very little about schizophrenia, yet psychiatrists and most modern day mental health workers in America will quickly, without question sign a paper that locks the patient in a place my dad would have said, “isn’t fit for a dog.”
Being a great dog lover there are many places I believe aren’t fit for dogs!
I must say that I am torn as to how to feel. The team of social workers who have worked with my son include some bright young people. I am grateful for the times when I’ve been able to talk with them in a crisis. I am grateful for one in particular for sitting with me on two occasions outside the emergency room, while I waited for the half dozen or so medical professionals to asses, and a few literally verbally harass my son to see if they could get him agitated, and finally the psychiatrist on call to decide if he should be hospitalized — hospitalized as in forced.
I haven’t had a place to turn to when my son needs help other than his team of psychiatric mental health providers. The medicine does help his ability to organize his thoughts and for him that is how the diagnosis of schizophrenia manifests; as a thought disorder. But what about his liver?
The psychiatrists say I must choose between quality of life and quantity of life.
My son’s psychiatrist did have him put into that institution again. I began praying and crying. They were threatening injections saying how my son couldn’t keep returning to a hospital without them doing something to put a stop to it, which was forced injections of long acting anti-psychotics. I called the head psychiatrist whom I’d met the first time my son was hospitalized. I asked him about the safety of the medications. He said he could not tell me that they were safe.
He also told me that only moments before I called a forced injection had been ordered for my son. He asked me if this is what I wanted. I cried.
Immediately he said he had to go and try to call it off before they administered it. I received a call in a couple more minutes from him confirming the injection was called off. He then told me they would, “send my son back to me just like he was when he got to the hospital.”
My son was released the next day. They put him in again about six months later for symptoms of depression.
I called the Chaplain’s office that time and had a surprising conversation with one of the Chaplains. “I wouldn’t want them to keep my son here or inject him against his will,” she said. I couldn’t believe it. Somebody at that place who worked there felt the same way as I do.
I cried more. I did not know what was right. I prayed. I prayed a lot. Then something happened that was most surprising. The hospital psychiatrist assigned to my son was against forced medication.
My son’s psychiatrist and the entire team who had taken out the commitment order were more than upset when I told them that I had had several very good conversations with this doctor. The doctor would take his phone away from people who could hear him when we talked. Once he had to go outside. He said he would not be approved of for telling me what he was telling me.
One thing that he kept saying was about my son’s spirit. “I don’t like forced medication in general,” he had said. “I have had to sign my name to orders in the past. There is something different about your son,” he said several times. “He is such a free spirit. He has a strong opinion about these drugs and everything he says about them is true. I believe that the drugs will harm your son more than the disease.”
When I prayed to God, well, I kept asking for my son to get the right doctor. I asked directly this way. Please, I begged God, give my son the doctor who will be what is best for him. When he got the doctor who kept talking about my son’s spirit and was honest about the drugs and what they do to the body, I did believe that somehow my prayer was… I don’t know. Heard?
The doctor would not write a letter for me which I asked him to do. A short letter saying what he thought but he didn’t do it. He sent my son home with a written prescription. He told me he could not send him away without recommending medication, even though he did not personally recommend it for my son.
The most recent time my son went to the hospital was local. He was treated well. Then he was attacked by another patient so they sent my son home the next day. The same hospital did this before when he was there. He was repeatedly attacked by a rather attractive, “hyper-sexual,” female patient.
I saw her attack him once. My mom and I had come for a visit. One big room where the nurses station can see everything with sofas and chairs for patients and their visitors. My mom, my son and I are standing there talking and the young patient walks over and gives my son a kiss that caused his grandmother’s eyes to widen and her mouth to fall open. I do believe it is one of the only times I’ve seen my mother silenced.
“Is that okay?” I asked the nurse who was following the patient and who stood there watching, as we did, while the young woman forced, without resistance, her tongue into my son’s mouth. The nurse shrugged her shoulders. My son was discharged the next day because they said he was not as sick as that young woman was and they couldn’t keep them both.
I remain torn. Visiting with one of my son’s friends yesterday I was filled with empathy as he told me how he feels when he does not take his anti-psychotic. He shouldn’t have to suffer what he shared with me.
I surely don’t have the answers. I do believe that if we had a place where we can find what a former professor of mine called, “The Three Ms’,” that healing could happen. “Meaning, Mastery, and Membership,” he called them. “People will go crazy without these things,” he said to our class one day.
I will tell you that I have met many people with a diagnosis of and the symptoms of schizophrenia and I can honestly say that each and every one of them are people I respect and admire, for reasons which are worthy of another story.
by dogkisses, 12/11/09
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Dan was funny and talented. He wrote poems, songs, played the guitar and sang, sometimes performing downtown for open-mike nights at various coffee houses or one of the locally somewhat underground etched out gathering places.
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