Effective family support — Krista MacKinnon on Madness Radio
Visit the Madness Radio to download this interview.
Visit the Madness Radio to download this interview.
Yesterday, I sat down with my son to discuss his recent difficulties that resulted in his going back on medication, the warning signs – will he be able to recognize them in future? – and observations about what we can do in the meantime to avert future episodes.
I’ll get to the title of this post after I meander through the events of this past summer and how they are informing some current thoughts about Chris’s troubles of the past ten years.
The latest mini-crisis may have started in June with Chris complaining about not sleeping well. He had finally come off the Abilify in April or May, having tapered over the course of one year from 5 mg down to nothing. His lack of sleep could have been related to going off the drug, and/or, lack of sleep could be something that he always needs to guard against. (Even as a toddler, he put himself to bed, early, which was kind of unusual, I would say.)
To be honest I didn’t give the latest professed lack of sleep too much thought, for several reasons. One is that Chris didn’t look or act like someone who wasn’t sleeping well. He got up early every day like clockwork, he went to bed at a reasonable hour each night, he didn’t have bags under his eyes. In September, when he again complained about not sleeping well (there were periods in between when he said he was getting a good night’s sleep), I suggested that he ask Dr. Stern for a sleeping pill. The rest is history. Dr. Stern put him back on an antipsychotic within two weeks of his asking for help sleeping.
If lack of sleep is the cause of this latest drama, then Chris’s growing lack of self-confidence that I DID observe in September, is a possible by-product. He was becoming downright weepy and talked of himself in very self-deprecating terms. Lack of sleep will do that for some people. For other people, lack of sleep will make them hostile, aggressive, or paranoid. Prolonged lack of sleep can eventually lead to hallucinations.
If you haven’t listened to Will Hall’s presentation in front of the American Psychiatric Association, please do. Will knows the territory of psychosis very well. In his speech he makes reference to lack of sleep as an under-recognized/under-treated factor in psychosis. Many people claim that they became psychotic following a period of intense sleeplessness. That fact I know well, but then it gets complicated. As Chris pointed out, the psychiatrists when he was first hospitalized talked about the importance of sleep in the recovery process, but they didn’t relate it to a possible reason for his becoming psychotic in the first place.
Chris started to go psychotic during his last year of high school, a time of intense academic pressure. He tells me that he drank coffee to keep himself awake into the early hours of the morning. For many people staying up late wouldn’t be a problem, but perhaps for Chris, who put himself to bed voluntarily as a toddler, lack of sleep for him means more than just being tired the next day.
My latest effort to help improve Chris’s resilience (help him get better sleep to avoid psychosis) was to move him into a bedroom that is much darker and quieter at night, and to keep him supplied with Dr. Hoffer’s niacin combination, which also aids sleep.
Perhaps if his psychiatrists at the hospital had focused on lack of sleep as a possible primary cause of his psychosis, rather than merely one of many symptoms of psychosis, his recovery to date would have been more straightforward. Why couldn’t he have been treated with a sedative at night, like Joanne Greenberg (author of I Never Promised You a Rose Garden) was given when she was a patient at Chestnut Lodge in the late 1950s? I suspect the answer may be that today’s patients are given antipsychotics during the day (which have a sedating effect), and sent home quickly in order to avoid costly hospital stays. Hospitals are not prepared to be Soterias. Joanne Greenberg spent three years at Chestnut Lodge, where she wandered the hospital during the day conversing with other patients, and saw her psychiatrist once a week. She was unmedicated and quite psychotic, but presumably got a good night’s sleep. After three years, she was released from hospital.
I am deliberately hedging my bets here about putting too much emphasis on sleep deprivation as a cause of Chris’s psychosis, but I do think it is an area that psychiatry has put too little emphasis on as a possible causative factor for some individuals. Sleeplessness in most people leads to anxiety, lack of self-esteem, aggression, and, in a certain segment of people, to hallucinations, all of which are considered symptoms of psychosis. Why not begin with aggressively treating sleeplessness through the more conventional means of sedatives at night and preparing the proper sleep environment?
I was going to write an update today on how well Chris is doing. Instead, after reading a postscript to the Huffington Post article by DJ Jaffe, I realized that Chris couldn’t possibly be doing well.
Jaffe is highly critical of the Alternatives 2010 Mental Health Conference, which took place Sept. 29 – Oct. 3 in Anaheim, CA. Jaffe is not a psychiatrist, but rather an opinion leader from the patient ranks. Jaffe is obviously a friend of state mind control, while maintaining he is a advocate for the mentally ill, so in that respect, people may confuse him with being a psychiatrist. He is no friend of the mentally ill because the opinion piece he wrote on the Alternatives Conference is a put down of human beings every step of the way in the best best tradition of institutional psychiatry. In a follow-up article today in the HP, Jaffe doesn’t seem to get that so-called mentally ill people are exactly like you and me, and that’s appalling, coming from someone who purports to want to help. He wants to lock’em up in a police state run by relatives in collusion with the police. He doesn’t seem to get it at all.
This guy is a do-gooder by appearance but he has aligned himself with interests that are the opposite of empathetic. There are many like him out there. They are not on the side of the sufferer because they continue to deny that the labelled person has any mind of their own or any rightous reason to behave as they do. They continue to believe that there is something called serious mental illness, because not believing in it might turn the spotlight on their own biases towards the individual. They use the language of dependency. The mentally ill can’t possibly know what is good for them, so we must protect them at all costs. According to Jaffe’s bio, he’s been advocating for the “seriously” mentally ill for over thirty years now. He only takes an anti-depressant. He’s done a good job in advocating in favor of the seriously mentally ill because we still have lots of seriously mentally ill folks whose relatives like Jaffe’s views.
Jaffe was very critical of Will Hall’s workshop of coming off psychiatric meds. The organizers of the Conference wanted Hall to downplay the coming off psych meds. From my understanding, Hall refused to change the wording and that in effect cancelled the workshop. The organizers then backed down, and Hall agreed to deliver the workshop.
First, I looked up Will Hall’s presentation – Coming Off Medications: A Harm Reduction Approach
Here’s what I read today (Oct. 6) on the Internet:
Participants will learn what a harm reduction approach is, receive a copy of the Harm Reduction Guide, understand the goals of medication empowerment, and explore how to collaborate in a partnership with prescribing professionals. This workshop is not medical advice but is about educating participants to be more empowered and make wiser, more confident choices about mental health treatments including starting, continuing, reducing, changing, and going off medications.
If this was the wording that Will Hall signed off on, then that’s exactly what I would want to see written.
Jaffe reports an updated description of the workshop which I reprinted below. If this is in fact what Will Hall agreed to, I am (a) very disapointed, to say the least, and (b) plenty discouraged today about Chris’s prospects because apparently Chris is seriously mentally ill, a schizophrenic who needs his medications to prevent him from deteriorating. (I thought it was my job to help prevent the deterioration.) As a labelled schizophrenic he has been singled out from the rest of the mentally ill people attending the conference as the worst of the worst. Other people who are not as well informed as you and me are going to take this advice at face value. Once a schizophrenic, always a schizophrenic is the message I get from this. Don’t ever separate these seriously whacko people from their medications or tragedy will always result. My job as a supportive parent who believes in her son’s innate wisdom and mental health and accepts my own share of the responsibility has just been delivered a devastating blow. So has your job.
Jaffe’s update on Oct. 2nd on what we are led to believe is the revised description of Will Hall’s workshop :
Updated 10/2/2010: The following section was inserted: “For the ‘labeled’ participants, there will be a workshop on how to go off medications. That could be a dangerous, if not deadly, ‘alternative,’ should someone with schizophrenia who needs medication to prevent them from deteriorating decides to do it”.
It replaces a section which previously read, “For the ‘labeled’ participants, there will be a workshop on how to go off medications. That could be a dangerous, if not deadly, ‘alternative,’ should any people with real mental illness be in attendance.
Jaffe’s description sounds like it might have been taken from document not related to the Conference agenda, e.g. “there will be a workshop.” Did Will Hall agree to deliver the workshop as described in the Jaffe update? Please, someone, tell me no.