Carers’ views on medication

Schizophrenia – people need to know that schizophrenia can be treated and controlled and that there might be people in this town who have schizophrenia and you might be working right beside them and you wouldn’t know. As long as the medication is taken and monitored, regular visits to the doctors, hopefully psychiatrists or clinical psychologists, to monitor their condition, with good family support they can function like anybody else. I understand that now. Not – it’s not sometimes in all cases. Sometimes that’s not possible. But a lot of the time it is and my son is back to being the quiet, funny, young man that I thought he was going to be.

On the whole I’d say that the medication has helped a lot [sound of pet dog snoring in the background]. I mean, compare him when he was here today, compared to a month or so ago when he wasn’t on the right sort of medication or the right level, and it was completely different, you know, chalk and cheese. So I feel like I get glimpses of the old him when he’s on medication. He’s certainly – there can be some side effects, like he can be sort of a bit vague and some of the medication has affected his weight, like he’ll put on a bit of weight. And be a bit sort of unmotivated to do anything.

I don’t know how much of that’s medication, or something else, but on the whole, I think, there’s been a really positive result from taking medication. I mean, that’s been the main treatment. It certainly hasn’t been talking therapies, even though people have tried. If he wasn’t taking his medication, I just don’t really want to think about where he’d be, or what his life would be like.

So when he went to this clinic, they changed the medication to EFFEXOR (venlafaxine), which you [might have heard of], and he suddenly went basically around the bend after that. Really had – it was foetal position – and talking madly, walking around the hospital thinking he was – he had sort of a break, basically, [a] psychotic break and thought he was going to get a medal. And he [was] wandering around the hospital waiting, you know, wondering where was the medal ceremony, and all this sort of thing.

So the drug actually pushed him over. Because they hadn’t actually diagnosed at that time, they thought it was just depression or it was social anxiety or it was anorexia – everything that was going on with him. And I don’t think the drugs were working too well with the bulimia and the anorexia stuff as well. So it was all just this great chaos. And they were trying – when he was in the clinic, it was the best place for him. It was the first time I felt actually comfortable that he was being looked after.

So the medications are consistent but the amounts changed. So [son] was very chronically – in the beginning he was very, his voices were – there was a lot. They’ve calmed down. So medication’s come down because the doctor suggested, if we go up with the medication, the voices might be faint. But it wasn’t the case, the voices were still there and there were severe side effects of too much medication.

So if the voices are still there and you’re giving too much medication, then I’m not dealing with the illness, I’m dealing with the symptoms. The illness is still there and the symptoms are worse than the illness. So after the olanzapine was given and [son] had that fit, I thought, ‘No, no, this isn’t right because [son] isn’t functional. He’s sleeping too much. You talk to him, he’s vague. No, he wasn’t functioning properly’.

So therefore I sat and did my research and now we’ve come to a – the medication’s the same, but the amounts have shrunk. Because we’ve come to a stage now where [son]’s medication is correct for him to be able to function [to] some [extent] during the day. You know without eyes rolling or voices hounding him.

Some [medication] made her put on heaps of weight and get really bad skin, which really affected her self – it affected the way that she viewed herself. And then some gave her insomnia so that she couldn’t sleep. Some made her really anxious and depressed as well – gave her some depression, which I think was often in some cases was trying to be balanced out by other kinds of medication like VALIUM (diazepam) and stuff like that.

Which I just thought was craziness because once a medication starts giving side effects that are similar to the symptoms of the illness – how do you identify which is the illness, which is the side effects, and which is the real person underneath? All of that. I don’t know if it’s the diagnosis or the medication to treat the diagnosis.

Because she’s been on so many?

Because she’s been on so many and none of them have really helped that much. It helps to a degree, it seems, for some things. But then are they not enough or something? I don’t know.

You said something really interesting earlier about when the medication evokes side effects that are similar to what you’ve been told the symptoms of the illness are.

Not necessarily symptoms of the illness. The way that I see it is that they are emotional or psychological symptoms, side effects, which to me is just confusing because then how do you differentiate between the illness and the side effects of the medication when they are both psychological?

But after a while l learned the side effects, especially what the psychiatrist had prescribed medication for him and injections, and the district nurse was coming to our house doing that. But that’s when I stopped them and I said, “No more. You can’t – he just can’t cope with any more”. He was like a zombie. And that’s when I, well, his brother helped me get him into the back seat of the car and I took him to hospital and then he had to stay there because he was overdosed.

They’d overdosed him because I was allowing them to give him that medication because that’s what he was prescribed and that’s what I thought he needed. So he was admitted to hospital and gradually taken off [the medication] and, you know, it was a matter of what suited him, how much. And that’s the case even now, you know, we have to – he’s on a pretty stable dose of medication now. But sometimes we thought perhaps he might need to go up a little bit more for a while because he’s not well – we say, ‘well’ – at that time.

It was too high for him. The injection, the medications and everything caused him to flip. And I got so worried that we did tests for epilepsy. And he wasn’t epileptic, he was just – it was just the medication that threw him into a fit. He nearly died because he was in the shower when he felt this thing come through. And then when he got out of the shower, thank God I was at home, he hit himself on the corner of a stool. And he was face down. And it really scares me to think, if I wasn’t here, he could have suffocated.

So I turned him onto the side, like I remember some first aid procedures, and turned him onto his side. So I opened up his air passages and then we rang the ambulance and he was recouped. And then we did all the tests, the epileptic tests, and it was proven that it was too much medication. So, thank God he didn’t suffocate. And that was traumatic. Then from that time on, I was very cautious of what went into his mouth because it was just too damaging. I just wanted to stop his medication and at that time I just didn’t want him to have any medication because it was so horrible to see him in that state of mind.

But he recovered and then I revised his medication with his doctor and we started to reduce the amount. After that I was going to take notes on all the side effects relating to different medications because I was observing his behaviour. And so I documented for about six months, all the side effects relating to every medication he took. We reduced the medications drastically and we also reduced the injections, because we had a Holter monitor put on him [for] the GP to see how his heart was going before the medications. And then after the – I’ve now found a very good balance. I, with the doctor – in conjunction with the doctor – agree that he’s in a very good space now with his medication.

It’s actually one of my pet hates. I really don’t like it when clinicians talk about ‘non-compliance’. Because it feels very much like they’re affixing blame. So if a consumer stops taking their medication, or forgets to take it, or has patchy adherence, or whatever, they label that as ‘non-compliance’. And it feels like, should there be any ramifications from that happening, it just gets put into this blame box, rather than perhaps teasing out why that’s been happening in the first place.

Like, are they not comfortable with the medication? Are the side effects really bad? Have they not – has it not been explained to them properly? Whatever it may be. But it just feels like a pretty inappropriate and dismissive way to talk about drugs that are really quite debilitating sometimes. I think I’m lucky, because my brother has been ‘compliant’ for most of his condition. But that period I spoke about earlier, [four years ago], when he’d been well and well-managed for 15 years and wanted to try going off his medication.

And, okay, he didn’t do that the right way, in that he didn’t consult with a psychiatrist, or taper down, or anything like that. He had a few months off them where he was well and then an episode was triggered, by what, I’m not entirely sure. But that was the first thing that they kind of latched onto, this issue of non-compliance. And I just think, you know, that’s not really fair.

I think if I had been taking something for 15 years and I was feeling really well and didn’t like the way that those drugs made me feel, I can’t say that, you know, I wouldn’t want to experiment with life without them. Anyway, I just think it’s not – talking about non-compliance isn’t necessarily helpful in a clinical setting. I think it just makes the consumer feel like crap in a situation where they probably already are feeling like crap. So I think if there is a new way to talk about that, it’s worth exploring.