Restored Post from July 28, 2011
Paraphrased: A sincere letter from a listener of The Real Me podcast and reader of the Porcelain Utopia blogs on schizophrenia:
My question is: My brother seems to do quite well defending himself psychologically from the voices most of the time when he hears them, but sometimes he looks distressed, and I have to re-direct him away from the voices, usually with a cheerful conversation, which most of the time works, yet, I wonder if I should be saying something to comfort him, or if I should just keep pretending that I don't observe him obviously hearing them. It seems like they may be taunting him; perhaps saying mean things to and about him.
I’ve posted my response at this late hour of the evening below, if it may be of any help to others. I have omitted any use of actual names, as requested…
Dear Listener/Reader:
This is what I would want (so it might be different than what your brother would want):
I’d emphasize being with him alongside the voices, by acknowledging them and perhaps letting him know that you can’t hear them yourself, but allowing your brother to know that you would think it must be hard sometimes, and remind him of how well he does coping with them.
This will allow for a comfort zone being established, hopefully, and just, for sure, I would not recommend any action or words that could cause your brother to think that you are “spying” on what he is hearing (causing him paranoia and fear—fear that you might be plotting to have him committed, calling the police, even the FBI, etc., even a doctor, for that matter.) He needs to feel safe and comforted.
If he wants to be comforted, even “mothered,” I’d recommend not pretending that you do not know he might be hearing voices or is being disturbed by them, but whether it’s rubbing his feet or forehead… kind of anything he wants to be comforted (if that is what he wants) as long as you are able to do it, and making sure that you also take care of your own self and your needs, even your own “time-outs,” etc.
He might always want to be left alone with them, or sometimes alone, sometimes with company. The company should be limited to you or just a couple of people he trusts.
Once you might be able to get a dialog going about the voices, this should give you insight as to whether or not they are commanding him in any way. If they are, you might show that you can identify but not necessarily understand as he does. Sometimes I will hear such things as “you’re going to die,” or “kill whomever…” If he admits that, again, it’s not necessarily an emergency. You might say, for example, “I don’t think you’re going to kill me… I think you are a terrific person.” You might, especially at first onset, gauge if he remarks by saying that it’s just a voice. This would indicate his awareness. And you can deepen your connection to his experiences. If there is struggle, or agitation (paranoia, possibly) with his being able/not to tell you that he is hearing harmful commands, could be a sign of lack of insight and possible escalation (into break, but still early sign only-it’s manageable at this point.) I congratulate you on your looking for help early on! Way to go! But might not be apparent that he will actually do what they say, and thus this particular symptom should be able to pass and even possibly reoccur, without much alarm.
Lots of schizophrenia is “chaotic,” but can soon become patterned (predictable behaviors), if good attention is given. It can be of benefit to pay attention to these patterns as they come to be. Really get to know your brother as a person and through his schizophrenic experiences. Sometimes they border on brilliant, and he is likely a very insightful guy, even if just within his inner world. “The schizophrenic often drowns in the same waters that the mystic swims in with delight;” and, “the difference between a shaman and schizophrenic is that they are both able to go into the other realms and dimensions; the shaman is able to come back, grounded, while the schizophrenic often cannot.” Remember, schizophrenia is a brain disease, and the brain controls EVERYTHING, even body temperature, and with new or changing symptoms, anything from body rashes, to allergies, to wearing winter coats in the hot summer is part of schizophrenia. Sz is often helpful to be understood as being a 3rd party, and not the individual person. The sufferer is deserving of help, freedoms and love, and from what I know about you so far, you do a great job with this—very rare, might I add, that you have the compassion that you do for your brother!
Medication adjustment is likely a good option to discuss with his doctor, and if your brother is OK with it, I would make sure his doctor is trustworthy, first off, and if the M.D. (the doctor SHOULD allow this) –is open to meeting alone with your brother, then part of session with just you and doctor, then you both (all 3 of you). Meds might make him extremely lethargic especially at first onset of new symptoms, lacking energy/motivation, but likely his doctor will taper the dosages down once stabilized, if it gets to that point. Patience is key. Energy, etc., usually comes back—could take months of trial-and-error and wait time for med changes. If your brother is resistant to taking meds, might consider 2-4 week injections, but would not recommend ECT or hospitalization (possibly brief to few months of treatment if needed and minimal meds as needed.) I would try everything not to make him feel “forced” into anything, and decisions should be cooperative. I’d try to stay away from weight gainers (led me to gaining 100 pounds in a year and Type II diabetes)—since lost the weight and reversed diabetes!
Comfort… comfort… comfort and his need for alone time if that’s what he prefers. Sometimes it’s the apathetic alone time that I’m better able to deal with the voices, while you might walk past him during his alone time, even if in a stupor of sorts and just touch his foot or head, letting him know you are there.
During these kinds of symptoms, if you want to hug him or even touch him, or even ask him a question, I would definitely ASK his permission first. Senses in general are often extremely heightened, and he might not want to be touched. Acceptance of this boundary is key. All of this is what I have learned from my own experiences. Your brother might not “hear” you, or respond, pick up social cues, or react “like normal.” These are all features of the illness, beyond his control.
Main thing is to do everything possible to keep him out of the hospital, have understanding and nurturing doctor, and having you as a wonderful and loving sister!
Jonathan Harnisch
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