Times and thinking change (again)

Today’s meeting with all three psychiatrists was to confirm Dr. Stern as the sole psychiatrist from here forward. We agreed that Dr. Stern could handle both the medication and the psychotherapy. Chris ended up with an extra psychiatrist after he left the hospital last May so that Dr. Stern could concentrate on the psychotherapy without having to always be checking on the med situation. The second psychiatrist has been bringing her boss to these meetings.

We discussed taking Chris off one of the two medications and all psychiatrists agreed that one medication was better than two. I was wondering if I heard this right. Up until now, the psychiatrists here have been saying that two are better than one, and suddenly, now they agree that one is just as good as two. This is what I have been saying for the past five years, and what psychiatrists in North America have been starting to say. This is encouraging, indeed.

Ian seems to be convinced that Chris will not relapse as long as he’s on the drugs, but Dr. Stern was of the opinion that Chris’s recent relapse may not have been related to going off the drugs. She felt that the relapse may have been more linked to the stress of our wanting him to go back to university away from home. I was delighted to hear her say this, that getting off meds doesn’t always imply relapse. More to the point, she can see a time when Chris may no longer be on any medication.

We agreed that should Chris ever relapse, we would intervene early, and involve a short term therapy program where medications wouldn’t necessarily be used.

Progress has been made.

Rethinking relapse

For every psychiatrist and patient who thinks believes that schizophrenia is a chronic biological disease that causes people to invariably relapse because of their “disease” after discontinuing their medication I am thrilled to present the following excerpt from the recent New York Times magazine article, Depression’s Upside

Consider a 2005 paper led by Steven Hollon, a psychologist at Vanderbilt University: he found that people on antidepressants had a 76 percent chance of relapse within a year when the drugs were discontinued. In contrast, patients given a form of cognitive talk therapy had a relapse rate of 31 percent. And Hollon’s data aren’t unusual: several studies found that patients treated with medication were approximately twice as likely to relapse as patients treated with cognitive behavior therapy. “The high relapse rate suggests that the drugs aren’t really solving anything,” Thomson says. “In fact, they seem to be interfering with the solution, so that patients are discouraged from dealing with their problems. We end up having to keep people on the drugs forever. It was as if these people have a bodily infection, and modern psychiatry is just treating their fever.”

I, too, relapsed the first time I tried to go off an antidepressant. I got back on the medication for a few months, rethought my exit strategy, looked further into homeopathic substitutes, and the next time I attempted to get off them, I was successful. For a while during this ordeal, I almost had myself convinced I was chronic. So what, then, is so special about coming off medications when the person is diagnosed with schizophrenia? The difference, I suspect, is stigma. Many doctors just can’t get out of their heads the idea that schizophrenia is chronic and that medications prevent someone from relapsing. They are afraid of the lurking beast. Rather than revert to treating the patient with understanding and empathy, they pile on drugs to prevent the scarier aspects of psychosis from rearing their heads. The meaningful but hard work of psychiatry is avoided in favor of prescription writing.

Coming off schizophrenia drugs should involve exactly the same thinking that this study has shown. In other words, you analyze the situation, you add more non-drug therapies (like CBT or other therapies I write about in this blog) and you resist the conclusion that most doctors are only too willing to hand you, that people with schizophrenia will always need their drugs because they just can’t function without them.

Relapse can mean that you are simply not there yet, that you haven’t yet developed the coping strategies and the self-awareness that is needed for a steadier toe-hold on life. It doesn’t mean that you are a chronic case. Relapse can occur while on the drugs or off the drugs but has a lot to do with your particular circumstances at the time. People often relapse witin a year of getting off their drugs. Relapse at this stage should not be attributed solely to the fact that the person is off the drugs. It is a dangerous connection to make. A far better way to look at it is to reason that maybe there are other things that you should be doing to develp your life coping skills, to make you more emotionally resilient. This is a strategy coming out of strength, not weakness. The weaker response is to succumb to the fear that there is nothing you can do to change, to admit that you are chronic and forever dependent on your drugs.

Commit me, too! I’m ready!

Chris’s holistic psychiatrist provided an updated list of supplements before she left on Christmas vacation as a last ditch effort to get Chris through this crisis. She was not in favor of putting Chris back on an antipsychotic, although if push came to shove she reluctantly recommended a mood stabilizer that would also help with the psychotic features. Ian and I welcomed the idea of the mood stabilizer, figuring that a mood stabilizer administered for hopefully a short period would be easier to withdraw from than an antipsychotic. We put Chris on a mood stabilizer, in part to satisfy Chris’s psychotherapist, Dr. Stern, and in part to cover ourselves with Dr. Stern should the situation deteriorate further. Then there was the community pressure (well meaning people) who kept reminding us something was wrong with Chris.

The complexity of administering the supplements and making sure that Chris took them as prescribed nearly drove me over the edge. It was all the worse because this time I was dealing with a psychotic underfoot. I lined up all his supplements for the week ahead and taped them into little paper packets, twenty one packets in all. I labeled them “1” “2” and “3” for swallowing at morning, lunch and dinner. He was now taking sublingual lithium drops and sulfur drops twice a day in addition to the mood stabilizer and the other supplements. I measured out the drops and stood over Chris twice a day to make sure he kept them under his tongue. I poured two liters of water in containers for him every evening and in the morning I mixed the powdered and liquid supplements in the distilled water for him to drink throughout the day. I slathered a detoxifying cream over his liver twice a day, and dabbed a special niacin cream that is supposed to work wonders with psychosis on both temples, wrists and the back of his knees. I supervised his detoxifying epsom salt baths which he did every second day. I watched while he put his detox footpads on every second night before bed.

In short, I was becoming a bloody psychiatric nurse. Actually, I was doing more than a psychiatric nurse would do. A nurse at least gets to go home and isn’t concerned with administering supplements. I entertained fantasies of putting Chris in the mental hospital to relieve me of my round the clock caregiver duties. The only thing that prevented me from doing so is that he would have been immediately put on an antipsychotic as the price of admission.

A slight change in his supplements, the addition of the mood stabilizer and my spending a lot of time talking to him about his feelings and his responsibilities over his actions enabled Chris’s condition to stabilize a bit over the Christmas period. This intense experience convinced me that Soteria and Kingsley Hall and the Jacqui Schiff home based approach worked better than what the critics reported. However, their approach needs a staff. I was simply exhausted and doubted whether I was up to the job.

Christmas was hell

By December 2008 Chris was in serious trouble, and I was no longer sleeping at night. We were right back to where it all started when Chris first went off to university six years earlier. His mind was slipping further into psychosis. I watched it all happen once again. How could I have let this happen? How could HE let this happen? Yes, I was glad earlier that he was becoming emotional for the first time ever, but he was also becoming a mess, losing his keys, his identification, forgetting his appointments, and singing, jumping and twirling in the streets.

He was spending inordinate amounts of time in the bathroom. More ominously, he was beginning to leave traces of fecal matter on the walls of the bathroom and on the parquet hall floors, just a hint here and there. He was also urinating in his pants. Ian and I had to re-examine Chris’s need for an antipsychotic, something I especially felt never helped him to begin with and might not even prevent his further slide into psychosis.

His holistic psychiatrist discovered from talking with Chris that he had stopped taking his detox footpads months ago and had been rather careless about some of his other supplements. (Chris was becoming increasingly cryptic when asked straightforward questions, so we are not sure where the truth lay on adherence to his regime.) He was in a state of toxic build-up according to the psychiatrist, that contributed to the expression of anger, mania and depression that Ian and I had witnessed.

From a purely biochemical point of view, my view of Chris as going through a needed stage of emotional release looked rather naive. However, did his emotional state cause his biochemistry to go out of whack, or did his alleged careless use of supplements cause his emotional state? Whatever it was, we wanted it fixed right away. We could concentrate on his needed emotional release after we rebalanced his biochemistry.

Christmas 2008 was hell. Alex and Taylor were both back from university and unhappy at home. They barely gave Chris the time of day, except to be irritated by him. This pained me tremendously, but at the same time it was a reasonable response on their part. People who communicate appropriately with others get included. People who don’t are shunned. Chris was behaving in his own particular psychotic way, crouching on the floor, speaking only the most banal thoughts (but ingeniously cloaked in aggression and sarcasm if you bothered to pay attention), taking long pauses in answer to simple questions, and continuing to urinate in his pants and decorate the bathroom with small flecks of feces. One night I woke up around 4 a.m. to find him in the darkened hallway. He said he was uncertain as to whether he was awake or asleep. I gently led him back to bed.