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The following are excerpts of an interchange I had with someone who follows this blog and who gave me permission to use it. Together we ask for responses to her final question, which I, being a patient and at a loss, cannot answer. I have done some editing for clarity.
Dear Pam...My son always says his head is very busy in the morning and he hears a lot of thoughts going on. When I inquire if these are like voices, he says, "No, I never hear voices". So, I tell him that it's ok if he hears voices and that that is part of his illness (and he knows that he has sz) and it's ok to talk about the voices and that I wish that he would because maybe it would make him feel better to share. But he still doesn't want to talk.
Maybe he doesn't hear voices!!! Don't you think it sounds like he does? I just wish he were comfortable in talking about it, IF he does in fact hear voices. Sorry if I seem to be talking in circles. And it bothers me that I would be concerned so much about the voices. So what? He hears voices? Big deal? Why does it matter to me? (I also express this to him.)
The other thing that my son told me is that he has to smoke a certain number of cigarettes at his day program because if he doesn't, the demons will come. In the past, he used to tell me that smoking keeps the worms out of his body (he was VERY sick when he spoke about the worms). Now maybe he has always felt this way about the cigs, OR maybe he is becoming more delusional (not a good thing) OR maybe he is learning to express himself better (which is a good thing).
My question is how can I tell? He says he feels fine and that things are fine, but he says that when he is very ill!!!!!! I find that his illness kind of creeps up and I get caught up in the stress of it and perhaps I am not a good detector of him going downhill because I always beat myself up for waiting too long for a hospitalization because he hates the hospital and I do too!!!!! I could go in circles talking about this and I know that there is no good answer to any of this. (Sorry if I am causing you stress and this makes you think about how Lynnie feels about you when you get sick. Which I know that you are very aware of all of this and I'm sure that my son is too) So anyway that is my recent worry...
Here’s the question: How do you know when your loved one is getting sick and how do you know when it's time for the dreaded hospital?...Because it's not only the person with the illness that HATES the hospital, but it's also the family members. Actually, one of the reasons that I hate the hospital is because often they use restraints in the ER unnecessarily. If my son says he needs a cigarette, they react... oh - oh he's getting agitated and we have to restrain him. It's sooooooooo ridiculous and I just HATE their "procedures"!!!!! They ADD to his illness and they give him (and me) post-traumatic stress disorder.
Boy, you really are bound up in your son’s illness...It sounds like you need a rest most of all, from worrying, from watching, from having to observe every tiny little thing he says and does and analyze it in terms of his SZ and whether or not he is getting ill again...I'd make that call on Tuesday. AND I'd contact NAMI immediately if not sooner and get involved with them, meet other parents and find someone to talk to there. I think that would help tremendously, to find other parents who have been through this too, and have come out the other side. I dunno if you are from a NAMI group or not, I don't remember, but if you are, why haven't you found anyone yet? Surely there are parents in situations much like yours. That's what NAMI is all about!
I wish I could solve your problems with your son, but as you know, SZ is different for each one of us, and I am not in his head. I can tell you one thing I do know: certain people with SZ call their thoughts heard aloud “voices,” so it is entirely possible that what your son hears could be thought of as voices. But if he doesn't interpret them that way, maybe it is better not to call them that until he does, though for all I know he recognizes it already, just doesn't want to say it aloud. Sometimes, when people called things by their real names -- voices, delusions, hallucinations -- even when I couldn't, it was very reassuring to me to know that they were phenomena of SZ, not necessarily real, even though they felt real. But like I say, we are ALL different in this illness and what worked for me might not work for your son or another person.
Thank you for giving me credit for thinking of Lynnie when I get sick and worrying about what my illness does to her...Alas, that is not the case at all. When I’m sick, I do not think about anyone nor do I feel anyone’s caring or compassion. I feel utterly and totally alone, bereft of all love, and in fact I feel so persecuted and hated that Lynnie becomes one of my persecutors, not someone who suffers because I’m ill but someone who is trying to hurt me! It was a complete surprise to me in August when I finally understood how hard my hospitalization had been on her. It had never occurred to me that she did anything but take it in stride and simply accept it as yet another in a long string...the same old same old. I never thought it caused HER pain, just because it was torture for me! In fact, I thought she enjoyed my being in pain; that’s how paranoid I was, I’m ashamed to admit.
Restraints are used FAR TOO OFTEN for my taste, I agree. And I think they are used punitively, at least in Connecticut, where hospitals have been cited as over-using them. I am horrified by how little it takes for someone to be restrained here, rather than “talked down” so to speak, and I think sometimes it is done because they can’t be bothered to spend the time, or simply because they don’t HAVE the time...It is more convenient and more efficient a way to deal with someone who is agitated, rather than to truly help them. But I could go on and on on that subject, having been in your son’s position many, many times, and feeling post-traumatized by it myself. The procedure is degrading and humiliating as well as just plain old TERRIFYING and it should be a last resort not one of the first ones thought of.
How to know when your loved one is getting sicker and the hospital is necessary? Well, that is a difficult one for me, because I never know myself. I suppose it probably takes good record- keeping, or a good memory, for a while at least, to know what “normal” is for any given person, what their baseline is, that is to say, even if it isn’t exactly normal (whatever normal means). You need to know how a person functions when at his or her best, or well enough to be out of the hospital, what symptoms can be present even so, what behaviors and symptoms are warning signs, what symptoms signify definite danger signals. It’s all a matter of observation, usually, unless the person is able to tell you upfront what is going on and what they need.
I can usually talk, but not always with enough clarity to make known the direness of the situation, especially if I am planning to take off for parts unknown and don’t want to be stopped, or if I need to follow what the voices tell me to do. I usually don’t tell anyone what they commanded until after I do it, which is counterproductive at best, since it always ends in a hospitalization (or almost always) and a big scar somewhere I regret. The last few times before I set my leg on fire, I put out cigarettes on my face in order to mark myself like Cain, as a murderer (not as God’s protected), a literal stigma, in the sense of a brand. But this last time, I actually called Lynnie first, because I was scared that by immolating myself, I could actually die.
I do not know, frankly, what my own warning signs of increasing illness are, though I know that Dr O recognizes them, from long familiarity with a sequence she once explained to me. And I never recognize consciously when the hospital is necessary. So I cannot help you there...In short, I’m part of the problem. Anyone else have a more helpful response to this question? If you do, write me at firstname.lastname@example.org and I’ll post it within my next blog entry.