This article describes the symptoms of schizophrenia and says a bit about what's known about the causes - though scientists are still working on understanding that. It discusses the ways loved ones can try to talk a person with schizophrenia around to accepting medication for it if they really don't like the idea of taking it or are convinced they don't need it. It's mainly about what the family of someone with schizophrenia can do to help them reduce the chances of having relapses of the illness after their first psychotic episode.
It's written for carers of people with schizophrenia or bipolar disorder. But there's a lot in it that people with conditions like that can themselves hopefully use as inspiration to make suggestions to any family members and friends they have around them about how they could help them.
The last section discusses things that might happen if it seems the person with schizophrenia or bipolar disorder truly needs to be hospitalised; but the majority of the article is about ways of trying to prevent relapses, partly so people can stay out of hospitals, which is naturally the ideal thing.
The article also gives advice on how parents and other family members of someone with schizophrenia can help them work towards changing behaviour that might have caused friction in the family, such as drug and alcohol misuse, and it gives advice on how family members and the person with schizophrenia can get on better day to day.
It gives advice on when a person with severe mental illness ought to be committed to a psychiatric hospital and how to talk to them about it.
There are stories in the article about how some people with schizophrenia and bipolar disorder who were at first resistent to any suggestions that they needed treatment were persuaded to accept it.
Skip past the following quotes if you'd like to get straight down to reading the article contents and self-help article.
We do not have to visit a madhouse to find disordered minds; our planet is the mental institution of the universe.
--Johann von Göethe
What sane person could live in this world and not be crazy?
--Ursula K. LeGuin
The point is, you see … that there is no point driving yourself mad trying to stop yourself from going mad. You might just as well give in and save your sanity for later.
--Douglas Adams, Life, the Universe, and Everything
You don’t have to drive me crazy—I’m close enough to walk.
We are all born mad. Some remain so.
--Samuel Beckett, Waiting for Godot
I suppose that the human mind can only stand so much grief and anguish. After that the fuses blow.
--Fynn, Mister God, This is Anna
it is possible for even the most deeply disturbed and desperately unbalanced among us to be a beautiful person.
--George Howe Colt, The Enigma of Suicide
A man who is "of sound mind" is one who keeps the inner madman under lock and key.
--Paul Valéry, Mauvaises pensées et autres
You know those drugstore kits that tell you when you’re pregnant? They should have one that tells you when you’re sane.
--Kristin Scott Thomas, Random Hearts
Show me a sane man and I will cure him for you.
It’s good to know that if I behave strangely enough, society will take full responsibility for me.
Maybe people are more like the earth than we know. Maybe they have fault lines that sooner or later are going to split open under pressure.
--Rebecca Wells, Divine Secrets of the Ya-Ya Sisterhood
I've been reading a book called Family Work For Schizophrenia. It's for therapists really, but it has a lot of information families themselves can make good use of. I've got another book, which is mainly for relatives of people with schizophrenia. That book does suggest that a lot of the information in it will apply to relatives of other severe mental illnesses like bipolar disorder as well. It features a story about how someone with bipolar disorder was persuaded to stay on medication when they weren't keen on the idea at first.
The book Family Work for Schizophrenia has an education booklet at the end, written by the main UK charity for people with schizophrenia and other severe mental illness, Rethink. It's about the symptoms of schizophrenia, and its causes and treatment. That is just written for relatives and friends of people with schizophrenia. I'll look through what it says:
Reading that, it seems it's common for parents and other relatives of people with schizophrenia to notice the person's different from how they used to be; they might prefer to spend time alone and hear or see things no one else can, although they won't believe they aren't real no matter how much anyone tries to persuade them.
It says the thinking of someone with schizophrenia can actually get muddled, so it becomes much more difficult for them to concentrate on what people say or to make themselves understood. So they can lose touch with what's going on around them, and then things they do can seem strange or eccentric.
It says their feelings might also change from the way they used to be; they might become more intense so the person can get very miserable or very excited, or they can fade away, so the person can lose interest in things or show less affection. It'll partly be the illness doing that to them.
The information says schizophrenia can affect people in different ways, but one big problem is that people who've got it don't realise the experiences it makes them have are part of the illness, because they seem so real to them. For instance, the voices they can hear really do seem like real voices, so some people with schizophrenia talk back to them, because they assume they're really there.
Also, some people with schizophrenia might seem very emotionally cold, and that might upset other family members; but they might be like that because the illness has taken over their thinking processes so much that it crowds out other things, so they just can't feel the same way as they used to, so they can't relate to friends the way they used to.
Someone who seems very awkward or doesn't want to do ordinary things like the rest of the family might be like that because the illness is doing such strange things it's made them completely absorbed in themselves so they don't realise or care that they're upsetting others.
It says it isn't always obvious to family members or anyone else that these things are being caused by the illness, particularly because it can be difficult for the person with schizophrenia to explain the strange things going on in their mind. Also, since it's a mental rather than a physical illness, there aren't any outward signs of it, so it isn't obvious at all that things like that are being caused by an illness rather than just their personality.
The booklet gives the example that it would be much easier to understand why someone with arthritis couldn't do the housework they used to or has to give up work, than it is to understand why someone who seems perfectly physically healthy has such problems. But the way their brain can muddle their thoughts and make them not feel like doing anything can play a big part; and because it's the brain, things can go on even though no one else realises what's happening.
It says schizophrenia isn't that rare. About one in 100 people will develop it. It usually starts in a person's early twenties or thereabouts, just when people are getting ready to branch out in life into a career or permanent relationship.
The education booklet says schizophrenia can take different forms, but there are certain things that will happen to almost every sufferer at some time during the illness:
It says thought disturbances are very common. People with schizophrenia can often say things to others that don't seem to make any sense. It can be confusing or frustrating. Or sometimes, they can talk a lot but lose the thread of what they've been saying. So communication can become very difficult.
What's going on is that the person's lost their ability to think clearly and to keep their thoughts in order. Their thoughts become jumbled, so they don't always make sense. It might sometimes seem as if their head is just flooded with all kinds of different thoughts, and the only way they can get rid of them is by speaking them aloud, so they might talk and talk and talk, though nothing they say seems to be making much sense.
Or sometimes, they might suddenly stop talking, as if their mind's just gone blank.
This can all be frightening for relatives, and the person with schizophrenia themselves won't be able to understand what could have happened to their thoughts. So they might spend a lot of time worrying about it and trying to work out what could be going on.
They might come to completely wrong conclusions, such as getting paranoid that other people might somehow be interfering with their thoughts. Or they might not understand why relatives and friends think they're not making much sense and think they're just being nasty to them. It can be very difficult to persuade them otherwise.
It can often happen that someone with schizophrenia hears or sees things that aren't really there, as if their imagination's playing tricks on them. They might hear noises or voices. Sometimes they can understand what they hear, and at other times, it makes no sense to them. Sometimes, they might hear voices talking to or about them, and they might be sure they know where they're coming from. For instance, they might feel sure they're coming from the television, from the wardrobe or from inside a part of their head. The voices can often say horrible things, and the person might often talk or shout back at them, even when there are other people there.
Occasionally, the voices might tell the person to do things, like opening the front door at night or staying awake. They might sometimes feel as if they have to obey the voices, and that can be very distressing for them.
Though some of the symptoms of schizophrenia make people believe things and hear voices saying things that aren't true, they feel as real as if they were true, so they will cause the same emotions as if they were. So, for instance, if the person feels sure government agents are after him, he'll feel as frightened as if they really were. Telling him it's just his imagination playing tricks on him won't do any good, because he won't believe you, because the experiences will seem so real to him. Asking him questions to make him think about whether there could be alternative explanations for what he's experiencing and whether the voices and things might not be real might be better, such as:
"Why would government agents be after you? Do you think your brain could be playing tricks on you?" asked in an investigative way, not a belittling one. "What evidence is there that government agents are following you, besides what you believe? Are there cars following you, for example? Let's go out and walk around and see if we can see any."
You might be able to help prove the belief wrong. But try to do it patiently, because stress can make symptoms worse for them.
The booklet says schizophrenia can also affect feelings. The person can lose the ability to feel the right emotion at the right time, so they might laugh about bad news or cry when everyone else is laughing.
They might seem less affectionate than they used to be or uncaring. There might be fewer and fewer times it's possible to really talk to them, and you might wonder if they think anything of you at all. They can't help being like that though, because the weird symptoms of the illness have pushed such feelings into the background and made the person focus on them so much they'll be very self-absorbed.
There might be times when they threaten to smash something or harm someone they're fond of. Sometimes their feelings can get the better of them, but they often don't realise the impact they're having on others.
More often though, they can be shy and withdrawn rather than threatening, and can be easily upset, especially if other people are irritated by the things they do.
Every now and then, they might realise how much they've changed and how different their life is from what it used to be, and they might become miserable or desperate and even say life isn't worth living.
Occasionally, they might do the opposite, becoming very excitable and overactive, and saying they haven't got any problems at all.
The booklet says something else schizophrenia can do is to make people feel less energetic, and so less willing to do things. They'll often prefer to be by themselves. They might sit in their room for hours at a time, listening or talking to their voices, or pacing up and down. They might rush through their meals hardly noticing what they eat, and then go back to their room. They might sometimes refuse to eat with the family at all, preferring to be alone. That happens because they feel uncomfortable around other people; they might feel awkward and unable to do or say the right thing. They might even actively avoid other people's company, even when before they seemed to like it.
Some people with schizophrenia feel as if people in the streets stare at them when they go out, so they can avoid going out, or only go out when it's dark.
The booklet says someone with schizophrenia might sleep a lot and might refuse to get up in the morning. They might be asleep, and awake, up and around at completely different times to the rest of the family. This will likely make it difficult for them to keep a job. A big problem is that they might not show interest in anything and have no idea what to do with themselves. Their minds might seem like a total blank, or they might pester others to do things to keep them occupied.
Not having much energy might cause them to take a long time over things like housework or a job, which might be frustrating for others.
Their lack of energy and motivation might also mean they can't be bothered with personal hygiene, and this can cause a lot of arguments. They might not bother brushing their hair, or refuse to have a bath or clean their teeth. They might dress unusually or refuse to change their clothes.
But sometimes, they might be slovenly about some things while being abnormally fussy about others. For instance, they might insist their room is kept in the exact way they like it, or that others don't disturb their possessions.
Not everyone with schizophrenia will have all the symptoms to the same extent. It can affect different people in different ways.
The education booklet says that part of what's thought to cause schizophrenia in some people is inheritance, but that isn't the whole reason it comes on. Just because it happens to one family member, it doesn't necessarily mean it'll happen to others. It might, but often, there's only one person with schizophrenia in a household.
If someone with schizophrenia has a child, the child won't necessarily get schizophrenia themselves. The risk that they will is quite a bit higher than for the average member of the public - there's a one in ten chance they'll develop it, whereas for most people it's one in a hundred.
There are other things that can contribute to triggering schizophrenia off. Things are still in the research stage though; no one knows that much for sure.
Some interesting research has found a link between certain infections in newborn babies and the later development of schizophrenia.
One thing that's been implicated as a risk factor for psychosis is cannabis use. Though there are studies that have found no link, they were apparently done on older types of cannabis which weren't as strong as some of the cannabis around today. And it seems that there are some things that make some people more vulnerable to its effects than others, - perhaps genetic make-up, though scientists aren't entirely sure yet, as far as I'm aware.
It also seems there could be a link between living in cities and schizophrenia, since though only a very small minority of people get schizophrenia, the percentage of people who get it does seem higher in cities than it is in the countryside, according to some studies, though scientists aren't yet certain about it and are also still working on finding out why it would happen, unsure of whether it could be to do with a more stressful lifestyle, the greater likelihood of pregnant mothers catching infections that could affect their unborn babies in cities, toxins like those that come from traffic pollution, or what. It seems there are also slightly higher rates of schizophrenia in places in the countryside that are so remote that people are isolated from others, so perhaps stress plays a role in that. Scientists still aren't sure about all this though.
Some studies have also found that there's a higher rate of schizophrenia among immigrants than among the general population of a country, so they wonder whether again, stress could be something to do with it. Again, scientists are still trying to understand it. But the research does suggest that there's more to schizophrenia than just a biological condition needing to be medicated; other things could help prevent flare-ups of symptoms, though anti-psychotic medication is the best thing doctors have to treat them at the moment.
Research has found that the family seems to be able to help prevent a person with schizophrenia having flare-ups of symptoms so often. There's no evidence that family relationships cause it. But families can help people with it stay fairly well for quite a bit of the time once they've got it, if they behave in ways that'll be as stress-free as possible for the person with schizophrenia.
The personality of the person with schizophrenia can help as well.
But people with schizophrenia do seem particularly vulnerable to stress. Attacks of schizophrenia are more likely to come on if the person has a lot to cope with in life at the time. Also, changes in their life and conflicts with others can bring attacks on.
The booklet says most people with schizophrenia do get better when they have treatment. They start to think more clearly, and then their strange ideas go away. Recovery isn't always complete, with some people always having some difficulties; but overall, if they can get treatment, they'll do well.
It says some people only ever have one attack of schizophrenia; they recover from it and never have any more. There are unfortunately a small minority who don't respond to treatment and never recover. But most people with schizophrenia, though they recover from an individual flare-up of symptoms, will have more throughout their lifetime, perhaps weeks later than the last one, perhaps years later. During new flare-ups of symptoms, sometimes new styles of strange behaviour will appear, but often the same pattern repeats itself again.
In between flare-ups of symptoms, it might be noticeable that the person with schizophrenia doesn't seem to be the same as they were before, as if not all the symptoms have disappeared. They might, for instance, still take a long time to do things, and hardly say anything when they're with other people. They might quickly lose interest in things, and be happy to sit around all day doing nothing. This can make it hard for them to get a job, so they might be unemployed for a long time. Or if they've been used to being the ones doing much of the housework, they might not get it done, so other family members have to step in and do some.
And even if they seem well, they might still not be as involved with the family as they were before. They might not want to join in with family events and not really seem to care about family occasions.
This kind of thing isn't done to irritate other family members. It'll partly be the effect of the medication they're taking, partly caused by the illness itself, and partly the person's own attempts to avoid being in situations that might stress them out so they'll risk becoming ill again.
While they're in a psychiatric hospital, or maybe living at home, they might be given tablets that they're supposed to keep taking. They help to stop the voices in the person's head, they can make them less anxious and restless, and they can help them think more clearly. So they can protect them against the stresses their own experiences would otherwise cause them, and from stressors in the environment.
After they start taking the tablets, they might not improve immediately. It might take days or even weeks before there's an improvement.
But the tablets need to be taken regularly. They're not like painkillers that you might take just when you get an injury but that you can stop taking as soon as it gets better. The medication people with schizophrenia take has to be taken all the time even when they're well, to keep the symptoms away.
Some people with schizophrenia are given injections rather than tablets. They have the same effects as the tablets, but last a lot longer. It can be more convenient to have medication given that way, because the person doesn't have to worry about remembering to take tablets or not wanting to bother. But they must have the injections regularly, once a month or whenever they're supposed to.
All medication has side effects, and unfortunately, the drugs people with schizophrenia need to take are no different.
The booklet says the most common effects are on the muscles. The medication can cause unwanted movements of the lips and tongue. They're not serious, and can be stopped by getting the doctor to lower the dose of medication, or prescribing another tablet that stops the movements happening.
The schizophrenia sufferers might not be aware of the strange muscle movements themselves, although they might be, and might be self-conscious about them and it might be one thing putting them off taking medication. So it's best to raise the issue with a doctor.
Another common side effect is putting on weight.
The medication can cause a variety of other side effects. You can find out more about them on the Internet. If any side effects are too bad, a different medicine can be tried. There are several different ones for schizophrenia, and the doctor might try the person on several different ones before they find one that really suits them. Unfortunately, some distressing side effects might occur before a good medication is found. One reason that might happen is that the dose the doctor puts the person on at first is way higher than they need. The newer drugs don't have as many side effects as the old ones, but some still aren't nice, so it's best to read up about them so you know the possible risks of each one, and to speak to the doctor about changing the drug or trying a lower dose of drugs if you're concerned.
If the person with schizophrenia is taking any drugs for anything else, or if they're even taking vitamins or herbal supplements, and also if they use alcohol or illicit drugs, tell the doctor about everything they take, since some schizophrenia drugs react badly with other drugs.
When the doctor's managed to prescribe the person a drug they can take without too many problems, they need to keep taking it, even if they feel better. It keeps the symptoms away. They might think it's pointless to keep taking the drugs even though they feel better. But schizophrenia doesn't usually just go away, so they need to keep taking the medication, because the drugs stop symptoms coming back again, so it's a bit like someone with diabetes having injections every day to stop their illness coming on.
They might find that difficult to believe, because they can come off medication for a little while without schizophrenia symptoms coming back. But just as the medication can take a while to work when the person starts taking it, it can take a while for the symptoms to return when they stop. It can even take months sometimes for the symptoms to come back, depending on the amount of stressful things going on in their life and other difficult life changes that can make relapse more likely. So just because the symptoms don't come back at first, it doesn't mean they won't.
The symptoms of schizophrenia like lack of motivation and less ability to concentrate don't respond to the older types of medication, but they can improve on their own after a year or two. Since the schizophrenia has a lot to do with why they're happening, they're not under the person's direct control, so if you criticise them, you'll be criticising them for things they can't always help.
The booklet says drugs aren't the only thing that can reduce the risk of symptoms coming back. It's been found that the atmosphere in the home and the way the family deal with problems is just as important, since stress causes relapses, and people with schizophrenia can be especially easily upset and sensitive to things around them that are a bit fraught. So trying to make the atmosphere as stress-free as possible can help.
Despite the best efforts of relatives, they might not always succeed, since a person with schizophrenia can even find changes in routine stressful. Big things like moving into a new house or taking an examination can be so stressful they can even bring on another attack of schizophrenia. When such things have to happen, it can at least reduce their stress if you tell them what's going to happen some time before it does, so they have some time to get used to it.
Living with someone with schizophrenia might well be stressful and difficult for you, since they might behave strangely, talk to themselves all the time, spend all day lying in bed, and take hours to finish things they start. It's common for this kind of thing to make family members angry and they can lose their tempers. Or they can find themselves extremely worried, wondering where the person is and what they'll do next. Perhaps you've done both. And you might have worried over questions like how you're going to cope if this just goes on and on and on, and what will happen in the future. Worrying over things like that might have made you anxious and upset.
It's no surprise if you feel like that. Unfortunately, if you get angry and harshly criticise the person with schizophrenia, or they pick up on your worries about them, it can stress them out, since they'll get upset easily, so being criticised or fussed over will bother them more than it might some other people, so they're more likely to have another attack of schizophrenia.
One of the best things you can do may well be to arrange things so the person with schizophrenia can spend some time apart from other family members, so you don't get on each other's nerves so much. It can help if they can be as independent as possible, because finding they can do things for themselves can help them build up their confidence so they feel less anxious.
Sometimes a psychiatric hospital they've been in will arrange for them to go to a day centre, or help them find a job.
Sometimes, if their relationship with their parents has been stressful, it can even be better if they move from home and live in a hostel for a while. If they're going to do that though, a lot of preparation needs to be made before they can be that independent. They'll have to build up their confidence and living skills gradually before going.
But if you have to be together a lot of the time, it's best if you can try not to shout or criticise or fuss over them too much. It might be hard to stop, partly because you might feel as if you're not being caring enough if you stop trying to change their behaviour, and you might worry that the person with schizophrenia might think you've stopped being interested in them. But it might turn out you're worrying unnecessarily; and in the long term, not being so involved with the person will benefit both you and them, you because you don't feel so burdened, and them because they don't feel so anxious because of your worry and criticism.
You'll need relaxation time yourself. It's important for your own health that you don't sacrifice too much relaxation time to look after them. Everyone needs to take time out to relax. So don't feel that what they want always has to come first. Try and arrange to have some time on your own just for you as well.
There is hope that things will improve overall. Studies have concluded that one in four people with schizophrenia will recover completely and stay well for years, while most of the rest can improve and go on to lead a fairly normal life outside hospital.
The author of the other book I've been reading, clinical psychologist Xavier Amador, says a lot of people with schizophrenia or other serious mental illnesses like bipolar disorder refuse to take medication or participate in other treatment, because they won't admit, or don't realise, they have a problem. So his book's called I Am Not Sick I Don't Need Help. He says it's common for them to get angry with family members who try to convince them to get help, perhaps accusing them of being the ones with the problem; or they might leave and go wandering off who knows where for some freedom.
He says most studies have found that about 50% of people with serious mental illness like schizophrenia and bipolar disorder don't take their medication, and poor insight into what their illness does to them is the main reason. He says research and his own experience has made him think that the poor insight often comes from not realising their illness has made them unable to function as they used to, and that it's the effects of the illness itself on the brain that have stopped them being able to realise it. He thinks it isn't that they just refuse to accept they have a problem out of defensiveness or something; they genuinely don't think they have one.
He says it isn't as straightforward as people with serious mental illness having no insight into the problem; some will have more than others. Some, for instance, will sometimes be able to think of several alternative theories about what might be causing the voices they hear, even if they sometimes think the least likely ones are the most likely. And some people can be more insightful about their illness at some times than at others.
He says some people with schizophrenia aren't even worried at all by their illness symptoms, so they won't understand why anyone else is bothered.
He says families might sometimes be reluctant to try to convince the person with schizophrenia they need treatment, since they might hate the thought of the arguments it might cause, or they want to respect the person's right to go untreated if they prefer, or because when the person's condition's stable, they hope things will get better so there won't be any need. But people with such illnesses tend to relapse, and research has found that without treatment, they get worse.
Dr Amador says some people worry that people with serious mental illness who do gain insight into their problems might become so demoralised by what they realise is wrong with them that they sink into depression and even end up killing themselves, so it's best if they carry on thinking nothing's really wrong. But he says some types of insight are good and often have positive results, while other types can be bad. Overall though, insight is good, in moderation.
He claims it's not actually that important whether they come to think of themselves as ill, as such. If they can be persuaded that medication will help them function better in society, whether or not they believe they're actually ill isn't of real importance. If they take the medication because they believe it will help them in some way, such as if they've noticed they can work better on medication, then the theories and technicalities behind just why they need it don't need to be an issue. What's important and can be persuasive is that they know just what it could do for them.
I suppose a comparison could be with exercise equipment; you don't have to believe you're an unfit slob to believe it's going to do you good by improving your fitness if you use it. Even if you are an unfit slob, the full details of your unhealthiness and the effects it's having on you don't have to be brought home to you before you're likely to ever be persuaded that exercise will do you good. Someone trying to motivate you to do more exercise, if they were likely to be any good at doing it, would entice you to do some by talking about what it could do for you, not make you feel miserable by focusing on how terrible a condition you were in and so why you needed to do something about it. You'd naturally have to know you weren't in top condition to be interested in improving your fitness, but you wouldn't have to accept, for example, that you were two stone overweight, that your heart was more likely to become diseased in a decade if you did nothing about it, and that in a hundred metre race against a top athlete, it would take you six times longer to run the distance, if you managed it at all.
The psychologist Dr Amador says a seriously mentally ill person's unwillingness to get help can often be blamed by people who know them on stubborn defensiveness or an unwillingness to lose the nice things their condition can cause like delusions of being special; but actually, far more of a cause is impairments in the functioning of the part of the brain that's causing the schizophrenia. People really often do just not realise they have a problem. He says research suggests they have impairments in the functioning of the part of the brain that allows people to update the way they think of themselves. So the way they think of themselves might have been accurate at one time in the past, but it's no longer accurate. They don't realise it isn't accurate any more.
So, for instance, if someone told them they couldn't hold down a job and never would, they'd actually feel like one of us would if someone said that to us. We might get angry. If doctors started saying that kind of thing to us, we might begin to feel frightened and persecuted. That's how people with schizophrenia feel, because the image they have of themselves is an outdated one where they were confident they could hold down a job and so on. So they'll be convinced the people telling them they can't are wrong. They genuinely believe they have the same abilities and life chances as they did before they became ill.
Of course, the problem of their unwillingness to seek help will be made worse by their experiences of any nasty side effects from medication they've had in the past. Side effects are a common complaint about medication. But then, Dr Amador says it's generally assumed that unwillingness to experience the nasty side effects of medication is the main reason people with schizophrenia don't want to take it, and yet research has found they have the same rate of refusal to participate in non-medical treatments. So he says lack of insight into the fact that they're ill seems to be the main reason they refuse it.
He says in his book that anyone who finds it difficult to believe the brain could do that to someone can look at some articles about the really bizarre things that can happen to a person's perceptions when they get some kind of brain damage. He explains that there's a book called The Man Who Mistook His Wife For a Hat by neurologist Oliver Sacks. Sacks talks about some of the weird things brain damage can do. The man with the condition he named his book after had cancer of the visual parts of his brain. He could see perfectly normally; but his brain scrambled the signals it got from his eyes so he misinterpreted what he was seeing. When Oliver Sacks first met him, he says he seemed perfectly normal and very intelligent, so he couldn't understand why he'd been referred to his clinic; but as the conversation went on, he noticed some strange things about his visual perception. When asked to put his shoes back on, the man stared at his foot for several seconds with a lot of concentration. When Sacks asked if he could help, the man said no and looked around, until he grabbed his foot and said, "This is my shoe, no?" When he was shown where his shoe was, he said he'd thought that was his foot.
Another time, the man was sitting in Sacks's office with his wife, and when it was time for him to leave, he grabbed hold of his wife's head and tried to pick it up and put it on his own head, thinking it was his hat.
Dr Amador says what's going on in schizophrenia when people don't realise they have a problem seems to be a form of anosognosia. He doesn't explain fully what that is, so I looked it up. Wikipedia says it's sometimes a consequence of a brain injury, sometimes caused by something like a car crash, or sometimes caused by a condition like a stroke, where someone with a disability just doesn't realise they've got it. They might not believe anyone who tells them they have. It says that can include even quite severe impairments like blindness or paralysis. It says it's actually quite common for stroke victims to have the condition for a while. It says the causes aren't entirely clear, but it seems to be caused by damage to part of the brain controlling the more subtle kinds of thought, and there is evidence that lack of insight in people with schizophrenia into their condition is also due to damage to part of the front of the brain.
It says most cases of anosognosia disappear over time, though not all.
Dr Amador says in his schizophrenia book that he himself has been with patients with physical disabilities who have anosognosia. He says once, he asked a patient who'd suffered a head injury that had damaged part of his brain in a car accident that had also made him paralysed on the left side if he could raise his left arm. He said he could. When asked to do so, he didn't, but thought he had. Dr Amador asked him to raise it while looking at it. When he tried and discovered he couldn't raise it, he jumped to the conclusion that it must be tied down. He couldn't understand that it had been paralysed.
Dr Amador says it's no wonder people with schizophrenia tend to think they've been hospitalised and medicated for unjust reasons, if they genuinely don't realise they're ill.
He says just as with anosognosia in people with physical disabilities who are sometimes perfectly aware they've got some disabilities while at the same time completely unaware they've got others, people with serious mental illness can be totally aware of some of their symptoms while unaware of others.
He says there is evidence that the parts of the brain thought to cause these symptoms in people with physical disabilities are the same ones that are impaired in people with schizophrenia and other serious mental illness. The damage doesn't affect general intelligence, just certain functions like the awareness of impairments in abilities.
So he says when trying to persuade someone with schizophrenia or another serious mental illness to get help, it can reduce the amount of frustration the person trying to convince them they need it can feel with them if it's remembered that it's the illness making them deny they need help, not stubbornness or anything like that. In fact, thinking it's the illness you're up against, not the person, can stop the anger with the person that might otherwise lead to conflict that would make them even less likely to want to do what you were hoping they would; so knowing it's the illness can contribute to success in getting someone to seek help.
He isn't saying that lack of insight into the problem is the only reason someone with schizophrenia might refuse medication. After all, later, he talks about how you can discuss the advantages and disadvantages of taking medication with them, which will naturally include talking over their reasons for not wanting to take it. He's simply saying that their lack of insight is likely not to be their fault, and that knowing that will hopefully reduce your anger with them.
And he says thinking of their lack of insight into their illness as a brain dysfunction can actually be cause for optimism, because teaching them certain skills can mean other parts of the brain take over the role of doing them, to compensate for the damaged bits not functioning properly. So it might be possible to fix a brain more easily than it would be possible to change someone's stubborn attitude.
He says it can be done in the same way it can be done for people who suffer brain damage because of strokes or accidents and the like. He says specialists will make careful assessments of exactly what functions a person needs to regain, and then devise strategies to help them regain them in ways that bypass the damaged bits of the brain. It's called cognitive remediation.
He gives the example of how that was done for someone, a man who was on his bicycle when he got hit by a taxi. If he'd been wearing a helmet, he'd have been allright; but he wasn't, so he suffered a brain injury. His short-term memory became quite impaired, to such an extent that he couldn't remember where he'd parked his car once it was out of sight; and when he went shopping, he couldn't remember what he'd wanted to buy once he got to the shops. It seemed impossible for him to remember important things like appointments, the names of people he'd just met, and other information. The memory of it disappeared before it could be transferred to his long-term memory, which was still working well. So he could have had a lot of problems.
But he was taught strategies for coping. He had other skills that could be used to substitute for the ones he'd lost.
The most important thing that helped him to learn new things was that he was motivated to develop other skills. He was frustrated at being so forgetful, and determined to practise new ways of coping.
One skill he did have that would come in useful was that he was able to concentrate well for short lengths of time. And his memory for things like pictures and shapes was much better than his memory for words. Also, once something did manage to get into his long-term memory, it tended to stick there.
So he was taught to make pictures of things in his brain, rather than trying to remember the words he read. He could think of the words he read as patterns rather than as sequences of letters. And when parking his car, he would make a map in his brain of the surroundings and where his car was, rather than trying to remember row letters and parking space numbers. He imagined he was looking at the place from above to make his mental picture. He found parking his car easy when he started doing that.
He also developed the habit of keeping a note pad in his pocket and writing down anything he needed to remember.
To get over the problem of him forgetting to look at his note pad to remind himself of what he'd written, he set his watch alarm to go off every thirty minutes, and after a bit of practice, he remembered that meant it was reminding him to look at what he'd written.
He learned to remember people's names by thinking up pictures in his head to associate them with. For instance, if someone introduced himself as Tom, he'd think of a tom-tom drum and associate it with the person. If someone said her name was Carol, he'd think of a group of Christmas carollers to remind himself. He transformed the image of a friend's newborn baby called Elizabeth into a picture of the Queen of England. He remembered to think of a toilet whenever he wanted to remember the name of someone who'd told him he was called John. His image of someone called Jack was transformed into a car-jacker, and so on.
He used the same technique to remember other things as well. For instance, to remember to meet a friend at McDonald's at five o'clock, he pictured five golden arches in his mind.
He got so good at visualising things like that to remind him of things that he often made a game of it, challenging other people to come up with an image to match a word or phrase.
Dr Amador says there are big similarities between that kind of thing and helping seriously mentally ill people learn to become aware of the symptoms of their illness and be willing to get them treated. It's possible to teach them to develop ways of thinking to substitute for the ones their illness has robbed them of; and it's easier than it might seem. Basically, if they don't realise they're ill, instead of thinking they need to get treatment because they are, they can be taught to think of taking medication in terms of what advantages it can bring them, such as being able to stay out of the hospital and not having their family so displeased with them.
He explains how it can often be done.
I'll talk about that later. But first, here's some information on ways it's possible to help people with schizophrenia and other severe mental illness get less flare-ups of their symptoms even if they're not taking their medication.
The book Family Work For People With Schizophrenia says studies have found that flare-ups in the symptoms of someone with schizophrenia and other severe mental illnesses happen less often when families can reduce the amount of conflict in their home, and also when families stop being so protective of the person. It's natural that the behaviour of the person with severe mental illness might have led to lots of arguing, for instance because they won't take medication so their behaviour is difficult; and it's also natural to get over-protective of them because of the things they can't do. The trouble is that both attitudes can cause them stress. Although stress isn't the cause of schizophrenia, it can trigger off attacks of it, so the person is likely to have more if they're living with stress. Showing anger and hostility towards them can increase their stress, and so can doing things for them that they're capable of doing themselves out of a wish to protect them or compensate them for the problems their illness has caused. The trouble is that doing too much for them might mean they get anxious about whether they can cope themselves, so they become more dependent on the person caring for them to do things for them. So the idea of becoming separated from you might really stress them out. When the illness is at its worst, doing a lot for them can be the best policy; but when they've begun to recover, it's best to help and encourage them to do more things for themselves, so they don't take advantage and get too demanding, and so they don't lose the skills they had before through lack of practice and get anxious about you not being there to help them sometimes. Also, it'll be good for their self-esteem to think they're making a contribution that matters, and to take as much responsibility as they can for their actions.
Parents might often want to compensate them for the problems the illness is causing because they feel responsible for giving it to them so they feel guilty; but even if it was something about your genes that made them vulnerable to it, or an infection you had that affected them while they were still in the womb that would make them grow up to get schizophrenia symptoms or something, you can't blame yourself for that. You'll have hardly done it on purpose. Besides, there's still a lot no one knows about what causes schizophrenia.
Here are some ways you can make it easier for the person with schizophrenia, without doing too much for them:
Showing you care about their feelings and taking their experiences seriously can help. Even if they're saying the most outlandish things, though you certainly don't have to pretend you believe them or can hear the same voices they hear and so on, discussing them as if you realise they have a serious and sometimes distressing impact on the person suffering them, and talking through possibilities with them as to what really might be causing them, rather than just dismissing them as nonsense or their own imagination, can help the person feel understood and accepted.
Also, some people have found ways of coping with bizarre behaviour without getting confrontational or upset about it. Here are some the book mentions, that might help you come up with new ideas yourself. It lists one for each method of coping you could try:
Taking time out from each other: One woman whose son would get very tense with her at times would suggest he take the dog for a walk.
Distraction: A woman whose daughter would get disturbed because she kept thinking she was hearing people talk about her on television would ask her if she'd go in the kitchen and make a cup of tea.
I've heard a few other suggestions for ways you could try to distract the person with schizophrenia so they're not being worried so much by the voices they hear: You could try to get them involved in something they'll find interesting; you could perhaps offer them something to look at, for example a newspaper article; you could try asking them to help you find something; you could try to engage them in pleasant conversation; or you could try encouraging them to be with other people they get on with well. When they're occupied with something, they might often find the voices aren't so bad.
Reality Testing: A father whose son claimed there were microphones in the door knobs gave him a screwdriver and asked him to dismantle the door knob to see if he could find any.
I've heard of other techniques of reality testing like that, such as if someone with schizophrenia feels sure people around them in the street are talking about them, a relative or friend can ask them if it'll be allright if they walk a few paces behind them to see if they can hear any, or if they're willing to test their belief by taking a tape recorder along so they can listen afterwards to see if it picked up anyone talking about them. Then if they didn't get any evidence that people were talking about them, the two of them can discuss together afterwards whether that means people aren't talking about them after all.
You could ask them what evidence there is for any strange beliefs they have. Not in a confrontational disbelieving way, but in a way that'll encourage them to ask themselves questions that'll help them think more critically about the beliefs.
For instance, if they believed their father was possessed by the devil, you could, in an attitude of gentle curiosity, ask them all kinds of questions about what outside evidence there was for that, and suggest alternative explanations their might be for what's making them think it's true and ask them what they think of them. For example, if a voice in their head told them it was true, you could explore with them whether the voice might not be real; and if they said the way their father shouts a lot must be proof, you could discuss with them other reasons why people might shout a lot, such as that it's the way they learned to behave as they were growing up, or that they're just naturally quick-tempered, or that something stressful is happening in their life that's making them irritable, and so on.
Protection of personal psychological space: A woman whose husband argued with the voices he could hear in front of her told her she knew he couldn't help talking back to them, but asked if he could do it in another room.
If the person with schizophrenia is distressed by the voices they hear because they're sure they're real, You could perhaps ask them questions to help them ponder on alternative theories about why they hear voices.
I've heard that some people think schizophrenia is caused because the brain's stuck in a dreaming state, even though the person's awake, so it's as if they're having a nightmare about someone out to get them or whatever, at the very same time that they're trying to function in everyday life. Perhaps you could ask your relative with schizophrenia if they think that's a possibility, rather than the voices being real.
Also, some people are starting to think voices can sometimes be the brain's dream-like or symbolic way of representing people who a person with schizophrenia is recalling from their past. For instance, a critical voice that keeps putting them down might be saying exactly the same things someone who bullied them years ago said.
So it might be worth asking them if they think there's a possibility that their voices are their brain bringing to mind in a dream-like way the words of someone they used to know. If they do sound like the words of a bully they once had, and they still haven't got over the way the bully made them feel, perhaps you could try helping them to.
Perhaps voices that tell the person they're someone special can sometimes be something to do with a bad experience they had as well. I once read a story about a doctor who was just being trained who worked in a psychiatric hospital in the 1960s which wasn't a nice place, and a young woman was brought in and diagnosed with paranoid schizophrenia because she'd heard a voice telling her she'd been specially chosen by God to give birth to the second saviour of the world. She seemed miserable and didn't want to talk to anyone. But this young doctor struck up a conversation with her and asked her about her childhood.
She described how her family were always disapproving and critical of her and her father was downright abusive. They were always making her feel worthless. She trained as a nurse because she thought the people she cared for were bound to appreciate her if she was doing nice things for them. But the first two patients she had were highly critical of her as well.
She ran away to be with her boyfriend, but he said he didn't want her living with him and told her to go home.
It was after that that she heard the voice.
She must have had a good think about her conversation with the young doctor. When she'd first started talking to him, she was feeling miserable, and said she knew she ought to think of herself as crazy, since everyone else seemed to have decided she was. But a few days later, she was much happier, and when she saw the young doctor, she asked him if he thought it was possible that her mind had created the voice that had told her she was special to compensate her for all the feelings of worthlessness. He agreed it was a possibility.
She became much happier after the doctor had the supportive conversation with her and she started thinking that the voice might have been her mind's way of trying to compensate her for being made to feel worthless. The hospital staff reported that she was a lot more cheerful, and the doctors said she'd gone into "spontaneous remission" and said she could leave.
I don't know how often the voices might represent something like that in a person's life. But it might be worth gently exploring possibilities like that with the person you're caring for with schizophrenia, as alternatives to their idea that the voices are real.
Also, since flare-ups of schizophrenia can be triggered off by stress, if you can work with the person with schizophrenia to reduce as many of the stresses in their life as you can, it might help prevent relapses.
His impression was that he had been imprisoned in a shelter deep down in the underworld of his personality, listening and biding his time while insanity rushed like a spring flood through the upper layer of his soul, roaring and crashing, leaving terrible destruction in its wake, a deserted, ravaged country. No, he hadn’t been crazy, but something inside him had been crazy.
--Christer Kihlman, The Blue Mother
Clinical psychologist Dr Amador says he knows of four steps people can take that'll help them become more effective at persuading someone with schizophrenia to take medication and participate in treatment, which involve calmly listening to their point of view to understand their opinions and feelings about what's happening to them, discussing them with them, and then working with them on areas of agreement that do exist.
Later in his book, there are chapters on how to get someone with schizophrenia involuntarily treated if they become a danger to themselves or others. But a gentler approach should be tried first if things don't seem so urgent. Dr Amador says he's developed a strategy based on scientific findings and nearly twenty years' clinical and personal experience. Here's how he says it can be done. First he summarises the four steps he says people need to take, and then he goes into more detail about each one:
He says it's important to take the point of view of the person with schizophrenia seriously enough that you can think of them as someone deserving respect and patience, so you can talk to them in a way that'll encourage them to take you into their confidence rather than annoying them by talking down to them. Even if you think they're talking nonsense, if the illness is making them do that, it won't be their fault, so you can still respect them. The point of listening is to find out what you can learn about their feelings, experiences and opinions, so you can understand what motivates them, what will appeal to them, what they want in life, what will alienate them and so on, so you have ideas on what you can use to tempt them to think more favourably about the idea of taking medication.
For instance, if they said they'd really like to stay out of psychiatric hospitals and would like to get a job, you could go on to explore with them the evidence that medication could help them do those things.
It might take a while before talking to them like that comes naturally. But persistence might well pay off, because the aim is to identify with them enough that you understand their point of view, rather than making assumptions about why they're the way they are and what will be best for them.
Once you know about what it's like to experience their illness, and what their experiences of treatment are, both negative and positive, you'll be in a better position to come up with ideas about how to persuade them to get treatment in a way that'll appeal more to them.
You'll need to find out what their hopes and expectations are for the future, and hear them out patiently, whether or not you think they're being realistic. The promise of being able to become more functional in certain areas that might help them achieve some of the things they want in life could help entice them into treatment, whether or not they think they're actually ill.
Another important reason to listen is to be able to identify the impairments they have in their thinking processes, such as how well they can remember things, how well they can pay attention and concentrate, and that kind of thing, things that are making them less able to function in the world. There are new psychological treatments designed to help with things like that. Perhaps you could investigate what kinds of social skills training and therapy is available in your area.
Basically, the things that need to be understood are the person's attitudes and beliefs about:
If you can find out all you can about how each particular delusion makes the person with schizophrenia feel, you can understand better how what people say to them when they hear about them must make them feel. So you can understand more about what kinds of responses will encourage them to think medication's a good idea after all, and what will make them angry or frightened so they'll resist the idea.
It isn't necessary to pretend you agree that a delusion's true to respect the point of view of the person having it. If you were having it, you might feel the same way as they do, so you can at least be aware that the feelings they have in response to their delusions and some of the conclusions they draw are rational under the circumstances, even though the delusions themselves are not rational. If you show them respect, they're more likely to trust you, so you can be more of an influence on them when it comes to persuading them to go into treatment.
If you can find out all you can about the reasons they have for not wanting treatment, even if you think some are crazy, it'll again give you knowledge that can help you determine what kinds of arguments for medication and other treatment are likely to just make them want to disagree, and what might make them more interested in the idea.
If there are even just a few things you can both agree you want to work towards, that's at least a start. You might think it's impossible to find significant areas of agreement with the person with the serious mental illness if they don't agree they need help; after all, you might seriously think they need medication while they adamantly don't think they do. It might seem like a sharp divide. But starting from little areas of agreement, then discussing things so they think through more and more ideas, you might find you come to agree on more and more things. Even if they still end up thinking they don't have a mental illness, they might decide to take medication for other reasons, such as if they notice they stay out of hospital when they take it, even if they don't really know the reason why.
Once you've listened to them and gained an understanding of what their illness and their treatment are like from their point of view, and of what they'd like to be able to do more of in life, you can be more confident you'll be able to think of things to say that they'll agree with. You can both make observations together about what isn't functioning on top form for them and what improvements would be nice. Find out everything you can about what they would like from life, so you know what would appeal to them if it held the promise of helping them achieve what they would like to do, as medication could.
Also, ask them questions about what happened when they didn't take their medication in the past, pointing out, in as non-judgmental a way as possible, the negative and positive consequences of their actions, as if you're a neutral observer helping them weigh things up, so they can't perceive you as someone who thinks they know best trying to push them into a decision, but they think of you as someone trying to help. That'll help them keep their confidence in you. Also, they're most likely to stick to a decision they make if they come to it because they themselves have decided after some thought that it would be the best choice for them. If they feel they're taking responsibility for their own actions, and they like the decision they finally come to, they're more likely to stick to it than if they think they're just doing something because someone else wants them to.
So rather than making statements that might turn out to aggravate them, such as, "See, if you'd taken your medication, you wouldn't have ended up in that mess", you'll be more persuasive if you ask questions about what happened, giving them the opportunity to think things through themselves and perhaps to start thinking about things in new ways.
Some of the questions you could ask could be things like, "What happened after you stopped taking your medication?" "What did the voices do after you stopped?" "How long after you stopped did you go to the hospital?" "How were you feeling by then?" That kind of thing.
The idea is not that you think you know best and are trying to manipulate them into making the right decision, but that the two of you are exploring advantages and disadvantages of treatment and going without treatment together, till you both come to some kind of idea for a way forward you can both agree on. That way, they're more likely to think of you as an ally and listen to what you have to say and consider it, rather than thinking of you as someone trying to tell them what to do and make them do things they don't want to do who needs to be resisted.
This is where you both talk about how to go forward to get the benefits you've both decided would be nice, and how to get the treatment you think would be most likely to bring them about.
So in this step, you both decide to work together to achieve a victory over a common opponent, the illness. You might call it different names, but it doesn't matter, as long as you both want the same thing in reality. So if you call it schizophrenia or mental illness, but the other person refers to it as a list of symptoms they're unhappy with or something, still not calling themselves schizophrenic, it doesn't really matter. The important thing is that you have ideas for treatment in mind that you're both happy with.
The strategy is likely to be a long-term process, where you keep listening to them talking about their attitudes and encouraging them to think through the advantages of medication, to encourage them to stay on it.
The book goes into more detail about each one of those steps:
That might not be easy, since the person with schizophrenia or another serious mental illness might have thoughts that are very disorganised so making sense of what they say isn't at all straightforward. The book gives some advice on how to glean the important information. It lists some things, and then goes into more detail about each one:
The author advises that rather than just striking up random chats with the person with schizophrenia or bipolar disorder etc., hoping they'll be willing to talk in-depth then and there about their problems, you ask them if you can chat to them at a specific time both of you arrange that's convenient for them, kind of like making an appointment. So you could maybe say something like, "Can we have a talk after dinner about your doctor? I'm curious about the way things are going with you. Will that be allright?" And you can arrange times as you go along to discuss how the person with schizophrenia feels about other things as well.
Dr Amador recommends people also arrange times when the person with schizophrenia and them can just chat while doing something they enjoy like having a walk together or drinking coffee, so they can build up a good relationship in a relaxed atmosphere; and if the conversation gets around to the person's problems, all well and good, but it's best not to put any pressure on them to talk. Times when you're together but don't manage to discuss anything can still be times when you build up their trust in you through being a friendly companion.
The author says once you've got into the habit of having relaxing times with them where they don't feel under pressure to talk, so they trust you're not going to start preaching at them as soon as they start expressing their views, it'll be easier to get them to agree to set aside times to talk about controversial things with you, such as why they refuse to take their medication.
If they're feeling upset about a specific thing at any one time, such as feeling under pressure to take their medication, you can take the opportunity to ask them if they'll talk about it with you, as if you're using what they're upset about at any one time as a guide to deciding what to talk about.
Remember you're finding out about their personal feelings, not at this stage trying to persuade them to do anything. So instead of expressing your views, think of yourself as being like a scientist gathering the information bit by bit that you need to solve a mystery. So instead of talking, as if you've already reached your conclusion, the book recommends you just try asking more and more questions in as relaxed a way as you can, to find out more so you can put together more pieces of the puzzle of what will motivate them to go for treatment.
So, for instance, if the person with schizophrenia is upset about having to take medication, ask if you can talk to them about their feelings about having to take the medicine, not the medication itself or your belief that they should take it, so they don't assume you're going to preach at them and refuse to talk to you. The book suggests that perhaps you could phrase your request for a conversation on the subject something like this:
"I'd like to understand why you hate taking your medication. Would you be willing to talk about it with me? I promise I won't try to pressure you to take it; I just want to understand how you feel about it."
The author says finding out how the person with schizophrenia thinks about themselves and whether or not they think they're ill is the key to working out what approach is most likely to work when it comes to persuading them to take medication and go for other kinds of treatment. If you can work with their beliefs at first rather than fighting against them, you can be more persuasive in getting them to try what you want them to.
There may be several other reasons why they don't like taking medication besides lack of insight into their illness. Finding out what they are can help you do something to contribute to easing those problems. Dr Amador lists several possible reasons the person might not like medication, as well as suggesting questions you can ask about what positive things it's doing for them. Finding out both the negatives and the positives can help you try and ease the negatives and sway their opinion by emphasising positives, if there are enough of them:
If you can find out their attitudes towards it, you'll know more about what advantages of taking medication to emphasise so they think about them more, and what you have to deal with to change their mind about what they perceive to be its negative aspects, such as if they're embarrassed to take it; and what you can do to ease negative aspects that are to do with the medication itself rather than with the way they think about it, such as going to the doctor with them and reporting bad side effects so another drug can be tried instead.
Another thing it's important to find out is what they want out of life, what they're hoping to be able to do, and what's important to them. Even if you don't think it's realistic, such as if they say they want a job when they haven't had one for years, don't put the dampers on their ideas or be scornful of them, because if they think you're working against them, it'll just put them off working with you and you won't get anywhere. If they eventually come to think of treatment as a way of working towards what they want to do in life, they're more likely to want to take it. So try to be as non-judgmental and diplomatic as you can, just listening to find out more, rather than expressing an opinion. Even if you think it'll take a long long time for them to achieve what they want to achieve if they ever do, medication will be a start, so don't put them off by rubbishing their ideas.
Also, some research has found that people with schizophrenia can be hyper-sensitive to criticism, so it can feel worse for them to be belittled than it would be for some people; so it's best to be careful what you say to keep them working with you.
So, for instance, if they said they were going to get a high-powered job when you knew they'd never held down any job for more than a few days before, you could ask how they think they're going to manage that, but not in a confrontational offensive way. So, for instance, instead of saying, "Just how do you think you're going to manage to stay in a job that good when you've never worked more than ten days in your life?" you could say something more like, "Why do you think you haven't worked very much up until now?" in a way that simply implies a question rather than an accusation. That could lead on to a discussion about the advantages of medication, since it could help them hold down a job. Saying things in a confrontational way could just lead to an argument where they stop listening to what you say and don't want to talk to you any more. But asking non-confrontational questions to make them think might eventually lead them to come to the conclusion on their own that medication would be best for them.
It is possible that by not directly contradicting what they say, they'll get the mistaken impression that you believe the delusions they have are true. For instance, if they say they're on a mission from God and they don't want to go to hospital because they know all the staff there are possessed by the devil, and you don't correct them but just ask them to tell you more about their beliefs, you might worry they'll think you believe it's true. But if the mistaken impression they get is only temporary, and if not alienating them from you by arguing with them enables you to work with them long enough to persuade them to take medication, then their beliefs will fade once they're on it, and then you'll have more chance of convincing them the belief is entirely untrue, because they won't hold it so strongly, if they still do at all, so it will be easier.
That doesn't mean don't explore other possibilities with them about what's going on to help them start doubting their delusions. But don't directly contradict them. You can ask them questions to encourage them to think about whether their delusions can really be true, but ask more like a fellow explorer investigating something, rather than as a superior making an obvious effort to lead them to a foregone conclusion.
If they directly ask you if you believe them or if you think they're just crazy, you still don't have to give an opinion. You can say you personally don't believe the strange things they believe are happening are real, but that anything's possible, and that at the moment you only want to find out what they're thinking and how they're feeling.
After all, when you think about it, what they believe might be highly improbable, but anything's possible, so you don't have to think of giving the impression that you're reserving judgment rather than rubbishing their ideas as being dishonest. What's important at that stage is not that they realise you don't believe them, but that you listen and understand, so you can find out more about what will motivate them to take medication.
Severe mental illnesses can cause thought disorder, where the thoughts don't follow logically on one from another; the person doesn't seem to be making any sense. Dr Amador advises that though it might be tempting and natural to keep stopping the person with schizophrenia to ask what they mean, or to assume they must mean a certain thing even though they might not, it's best not to try to interpret them by guessing what they mean or to stop them all the time to ask them to explain themselves better, because they'll get frustrated, and you might come away thinking they meant something they didn't. He says although it'll take some time, it's best to let them ramble on till they have explained themselves.
When they've finished speaking at any time during the conversation, Dr Amador advises that you often repeat back what you believe to be their main points to them in their own words, asking if you've understood them correctly, or asking for more detail. If they respond by providing more detail, it will help you get to know more about the way they think and feel so you might gain a better understanding of what might motivate them to go for treatment; and if you show you've been listening closely and want to understand more, it'll increase their confidence and trust in you, so they may well be more open to listening to you telling them your own opinion later.
Or you can try to pick up on their feelings and ask them if you're right about the impression you're getting about them, saying such things as:
"It sounds as if that makes you frustrated?" "Do you feel embarrassed about that?" "I get the impression you feel a bit humiliated by that. Am I right?" "Does that make you angry?" And so on. The aim is to encourage them to explain more.
It might take a bit of practice to get into the habit of having conversations like that. But it's worth trying until you become good at it, because of all the extra information you're likely to find out.
You could ask them if it's allright if you write notes while you're talking to them, about their likes, dislikes, hopes and fears, and beliefs about themselves and medication and so on, to help you remember them better. If your conversation has all gone out of your memory the next morning, the discussion will have been a wasted effort. Writing notes can help jog your memory later so that doesn't happen.
Having notes can help you plan what to discuss in the next conversation as well.
The person might not like you writing notes, but then again, they might be pleased that at least you're focusing on their beliefs and wants, rather than on preaching about what you think they should think and do.
If not during the conversation, then try to write down the main points afterwards.
If the person you're talking to gets the impression you care about them and are trying to understand the way they feel, they're likely to become less defensive and start trusting you more to have their best interests at heart, so they'll be encouraged to tell you more about the way they think about things and work with you to find solutions. They'll be more open to thinking about your ideas and different ways of thinking about their illness, because they won't feel under pressure to defend themselves, and because they'll know they have the freedom to explore ideas without being criticised unkindly or told what to do.
These are the kinds of issues where you can show them you care and want to understand more about their feelings and point of view, and share any opinion you have that any feelings you can understand them having are a natural reaction to what they're coping with, by perhaps saying you'd feel the same way to if you were them:
Frustrations (about nagging from other people to take medication and other kinds of pressure to take it, and also about aims in life they haven't been able to achieve, and so on.)
Fears (about such things as being stigmatised, what the medication might do, failing in life, and so on.)
Discomfort (related to what they feel the medication does do, such as making them put on weight, feel groggy, less creative, slowed down, stiff, and whatever else it seems to be doing.)
Hopes (of working, getting married, having children, studying more, staying out of hospital, being like everyone else, and so on.)
Even if you really don't think it's a good idea that they do some of those things, you can still care about the feelings that make them want to, and tactfully find out more about how they'd like to achieve those aims, by rephrasing back to them what they've said and asking if you understand correctly, or asking for more detail.
And even if you think some feelings they have are irrational, such as if they say they feel scared because the CIA are trying to track them down and want to kill them to stop them passing on God's message about how to save the world, or whatever their particular delusions are, you can still care about the fact that they feel fearful.
Once the person with schizophrenia feels you respect their opinion and are willing to listen, they'll probably come to see you more as an ally than an adversary, so they're more likely to want to listen to what you have to say.
That could be even more likely if you don't give them too much of your opinion at once, but talk first about things the person already agrees with you on, and then move on to things you want to persuade them of after that.
If you spot an opportunity to agree with them, take it. For instance, if they say an advantage of taking medication would be that the family would stop nagging them, agree that that would be an advantage; or if they say they'd like to do what they can to stay out of the hospital, agree that that would be nice. Then you can go on to discuss with them the possibility that taking medication could keep them out of hospital.
One way of persuading them medication's a good idea is sometimes to recommend they keep a diary of whether or not they're taking their medication when bad things happen like hospitalisation or losing a job, and if they discover those things always happen when they're not taking medication, they might conclude there must be a link and start taking it to see if life improves for them. You could help persuade them to start by discussing with them the links they've found.
Dr Amador has a brother with schizoaffective disorder. He says he used to criticise him a lot for not taking medication, saying he was crazy. But then he learned to listen and empathise with his brother's feelings, and often discussed the advantages and disadvantages of taking medication with him, and his brother came around to thinking of medication as more positive, till he decided there were several advantages of taking it: He noticed that when he took it, he stayed out of the hospital; the voices he heard would become less noticeable and bother him less; he would be less fearful; and he would be less likely to be asked to leave the coffee houses he enjoyed going to. So though he'd been adamant he wasn't ill, he still came to believe that taking medication was a good thing.
Dr Amador illustrates the technique of gentle persuasion he's been describing by using the example of a patient he worked with in the hospital. She'd had schizophrenia for twenty years, and had been in hospital a few times a year. She had hardly been able to work in her life, because on the rare occasions when she got a job, she tended to be dismissed after a few days because she started talking out loud to the voices in her head, and sometimes became paranoid of her bosses and co-workers and accused them of plotting against her, among other things.
She wanted a job on Wall Street like her sister, feeling embarrassed to have achieved so much less. Though it was obviously unrealistic for her to get a job like that, Dr Amador didn't point that out to her and risk antagonising her, but talked about how taking medication might be a start towards getting some job or other.
She didn't have much insight into her illness at all and believed the reason she hadn't been able to hold down a job was just because she'd so often been in the psychiatric hospital. She was angry about having been there so much. Though being in the hospital was naturally part of the reason she hadn't worked much, her symptoms were clearly the main reason.
She was willing to agree that it did seem that when she took her medication, she stayed out of the psychiatric hospital, though she thought it was just because her father didn't insist she was taken to hospital then. Dr Amador focused on the positive matter of their agreement that medication would help her stay out of the hospital and thus help her stay in a job as an area of agreement they had, that they'd come to after discussions they'd had where he'd tried to motivate her to get medication, rather than risking creating antagonism and wasting time getting nowhere by arguing with her about how she'd lost her jobs because of her symptoms and not because she'd been in the hospital so much. At first, he only mentioned the role her symptoms had played when she specifically asked his opinion.
The fact that she agreed that being in the hospital so much meant she couldn't work meant he could talk her into experimenting with accepting medication. He suggested she carefully observe things to see if the times she was taking medication coincided with the times she held down a job, suggesting she be like a scientist finding facts, to see if she stayed out of hospital when she was on it.
He lists six things he recommends people try and do when they think they might finally have the opportunity to try to persuade the person with schizophrenia to take medication:
The woman who'd had schizophrenia for 20 years and had hardly worked in that time began to talk about other reasons for losing jobs, after Dr Amador had spoken to her for some time and asked her if there were any other reasons she thought she hadn't been able to work, apart from being in the hospital so often. He noticed she did have little bits of insight into how her behaviour might have contributed, and some ideas that did actually make sense, amid otherwise delusional thinking. So he knew they were things she could think about to put together some idea of how there were advantages to taking medication after all.
He asked her if she noticed any patterns where the same things happened again and again before she got taken into hospital each time. She said the trouble always started with her father picking fights with her. She facetiously suggested one way she could stay out of the hospital in future was to move away from her parents. She didn't really associate being in the hospital with her symptoms flaring up at that point. However, she really didn't want to keep having to go to the hospital. And she said what always happened before she was brought in was that her family, and her father especially, would start arguing with her, thinking she was sick and trying to get her to take the drugs.
So she agreed that two advantages of taking medication would be that her father would stop nagging her to take it, and consequently, the arguments wouldn't develop till he made her go to the hospital. Both of those things were incentives for her to take medication.
She didn't seem pleased to acknowledge the two advantages of taking medication though, so Dr Amador quickly asked her what she thought the disadvantages were.
She said she wasn't a psycho, for one thing, so she didn't see why she should take it, and she didn't like the amount of weight she put on when she was on medication.
He asked her whether she had any other reason to stay off it, such as worries about side effects and other things.
She claimed that the medication made her hear voices, and said that besides, she didn't want to get addicted to it. After all, they were powerful mind-altering drugs.
He asked her if she wanted to hear his opinion, and when she said she did, he said that in all his years of professional experience, he'd never known anyone get addicted to those drugs, or to start hearing voices like the ones she heard.
She asked how he knew. He said he knew through talking to people who'd taken the drugs, and reading research.
She said she'd always thought they were addictive, and he repeated that they weren't, saying, "At least, I've never seen it". Then he asked her if she still wanted to put on her list of the disadvantages of taking medication that it was addictive and made people hear voices. She said no.
If she'd said yes, he would have put them on the list for the time being, but asked her if she'd think about it some more over the coming days, and asked whether she minded if they talked about the matter some more at another time.
He asked her if there were any other disadvantages of taking medication she could think of.
He says it's important to find out all the disadvantages people think there are, because they highlight issues that might need to be talked over before an agreement about what kind of treatment they'll accept can be made, and also because it makes you seem more credible, since they'll see you want to look at both sides, rather than just pushing medication.
The woman said taking medication was embarrassing. She didn't want people to know she had to take anti-psychotic medication.
Dr Amador asked if she minded him writing that down, along with other pros and cons she'd mentioned, since he didn't want to forget what advantages and disadvantages she wanted on her list. She said writing it down was fine.
He asked her what the advantages and disadvantages were again, and she said the advantages were that it would stop her father arguing with her and mean she wouldn't have to come to the hospital, but the disadvantages were that they made her feel as if she was "psycho", taking them was embarrassing, and they made her gain weight.
He mentioned the advantages whenever he got the opportunity, in the hope they'd sink in more.
He asked her to think about the advantages and disadvantages of taking medication some more over the coming days, and she got annoyed with him, thinking he was just trying to make her decide the drugs were a good idea because he wanted her to take them.
He said that wasn't quite the way he felt, and that she'd never asked his opinion. He asked her if she'd like to hear it. She said yes.
He said that though it was true that he would prefer her to take the drugs, the choice would ultimately be hers. He said the main thing was that he wanted what was best for her, just as she did. He said the medication wasn't the key issue; the talking point he thought was currently at the top of the agenda was her wish to get a job, and how being in the hospital prevented her from doing that.
He asked, though, for her opinion, on whether since she would only be able to keep a job if she stayed out of the hospital, and she'd only be able to stay out of the hospital if she went on medication, she thought taking it was a price worth paying, or did she still think the disadvantages of taking the drugs outweighed the advantages? He reminded her of the pros and cons on the list.
She said she wasn't sure if the advantages outweighed the disadvantages. So he suggested she did her best to observe what happened in the future and to think back to what had happened in the past, to see if she could work out if not taking medication coincided with the times she was least able to work, when her father argued with her most, and when she was most likely to be brought to the hospital.
In every conversation he had with her after that, he always brought the list of advantages and disadvantages of taking medication to the meeting, so they could remind themselves what they were and talk over them again.
On that particular ward, the staff kept detailed medical records; and he looked at them and discovered, as he expected, that the times she'd lost jobs had coincided with the times she'd been off medication, and the times she'd managed to stay in a job were the times she was taking it. He told her he might have found another benefit to her taking medication and asked if she wanted to hear it. He asked first so she wouldn't feel as if he was trying to push her into taking medication. When she said he could tell her, he said he'd noticed that the times when she'd lost jobs had been times when she'd been off her medication, and asked her if she'd noticed that too. She said no.
He asked if she'd be willing to think about it in the coming days and weeks to see if she could remember anything like that happening after all, and also if she could remember whether her and her father argued as much when she was on medication as they did when she wasn't taking it.
She agreed to think about it.
He asked her if it would be allright to add being able to hold down a job to the list of advantages of taking medication with a question mark, till she'd thought about whether it could be true or false some more.
She said he could, though she didn't think it was true that holding down a job coincided with her taking medication.
He said he thought it was true, but that it didn't matter for the time being. He suggested they just agree to disagree for the moment.
She grinned and said she'd agree that he was wrong.
He said that was OK for the moment, but asked if she'd be prepared to keep an open mind to the possibility he was right and have a think about it, and said he'd keep an open mind himself to the possibility he was wrong.
She agreed to that.
Dr Amador gives the example of that dialogue to illustrate how talking to the person with schizophrenia while trying to keep all the points in mind that he made about what to do and what not to do while discussing treatment with them can work. He says it's best to phrase as many of the points you want to make as you can as questions, so they don't feel preached at, but they feel as if you're respecting their opinion and wishes.
Dr Amador uses other stories to illustrate how the techniques he describes can work.
He tells the story of one man who was completely unaware he had a mental problem at first, but some time later accepted the need for medication, at which point the constant arguing with his family about his need for treatment ended. He'd been diagnosed with schizoaffective disorder. It was obvious to most people that something was wrong, because he had disorganised speech, and bizarre behaviours, such as wearing broken earphones that had been wrapped in aluminium foil. This was a man who thought he was a special messenger from God, that he knew Bill Clinton personally, and worried that the CIA was trying to kill him.
He heard voices, but they didn't bother him at all. Nor did the other symptoms of his illness. He didn't seem to think of them as anything unusual. They really bothered his family, friends and neighbours though.
He'd been hospitalised a few times before. He'd been on medication before, but hadn't wanted to be on it at all, and stopped taking it the last time at least six weeks before Dr Amador met him. After he stopped, one night, his paranoia reached such a level that he'd started yelling at his mother that she was interfering with his mission from God. He believed God had made him a messenger to world leaders, and that his mother was trying to stop him delivering a vital message to Bill Clinton, who was president at the time. He'd been trying to phone the White House and had written letters to him for days. He was hearing voices, and his speech was disorganised. Most frightening to his mother was that he thought he heard God's voice telling him to "lock her in the closet".
His symptoms had improved quite a bit in hospital. He still believed he was God's messenger and that the CIA was trying to kill him, but he felt less urgency about carrying out the mission he thought he had and was less worried about his safety. In fact, the hospital staff in charge of his case were so confident he was no longer a threat that they were about to discharge him with a referral to an out-patient treatment program.
He had agreed voluntarily to be put on the "schizophrenia research ward", even though he didn't think he had a problem. Although the police had brought him into hospital because he'd had a big row with his mother and his family were scared of what he'd do because of his delusions, he said he assumed it was because the doctors wanted to check him over to see if he drank too much or took drugs, because the police had been asking him if he drank and smoked. He assumed he'd been put on the psychiatric ward simply because there weren't any more beds on the alcohol wards where they would have sent him otherwise just to check him over.
Dr Amador says that was obviously a delusion. Imagining you might be on a psychiatric ward for an entire month because doctors just wanted to check your physical health, and that you were there all that time just because there were no beds in alcohol wards, wasn't realistic.
The man said he didn't believe he had any emotional or psychiatric problems of any kind, but that he had to stay in hospital because a judge had ordered it. He didn't seem to mind all that much. He said he'd moved to the schizophrenia research ward because his mother wanted it.
Dr Amador says quite a lot of patients don't seem to mind being locked up for that long even though they don't believe there's anything wrong with them, while others take out lawsuits and make threats.
He spoke to the man's parents. During several meetings, he taught them all the things he describes in his book about ways of talking to their son that would reduce arguments, and ways they could motivate him to come around to the idea that staying on medication was a good thing after all even if he still didn't believe he was ill.
They thought his techniques sounded like good ideas, because they were fed up with the amount of hostility and conflict there was in their home when they tried to confront their son about not taking his medication, and welcomed some new ideas about things they could try.
They realised their son wanted to stay out of the hospital as much as they wanted to keep him out of it, and that he really wanted more harmony in the home. The conflict faded away naturally as they stopped trying to convince him he was ill. It took about two months, but the son slowly began to listen and to understand how they felt about his medication. He felt bad when he was told his mother became very frightened when he wasn't taking his medication. Before, he hadn't been prepared to listen enough to worry about that because he'd always been on the defensive when they were arguing; but now his parents were listening and trying to use gentle persuasion instead of arguing, he started to care how they felt more, and his guilt about frightening his mother came out of several discussions they had, during which his parents never once told him what to do. They asked him questions, and when he asked them what they thought, they gave him their opinion, but always said they could be wrong about the benefits of him taking his medication. They said they didn't think so, but conceded there was a possibility they were wrong. So he didn't feel so pressured.
Because he came to feel guilty about frightening his mother when he didn't take his medication, and because his parents told him they might well feel they couldn't live with him any more if he didn't take the medication, and because he hated going to the hospital, and had been downright frightened last time when the police had arrested him so he didn't want that to happen again, he came to believe the advantages of taking medication far outweighed the disadvantages. It took a couple of months for him to come around to that point of view; but when he did, he stuck to it.
Some time afterwards, Dr Amador got a thank you card from the parents, saying he hadn't been in hospital for over a year!
Dr Amador says he used to argue a lot with his own brother who has schizoaffective disorder, telling him he was crazy and needed medication. The brother would just get angry, say he wasn't the one with the problem, and carry on refusing to take medication. But he wasn't happy with his life. And some of the reasons for his dissatisfaction were things that taking medication could help change. So when Dr Amador changed the way he spoke to him, and instead of being confrontational, listened to gain an understanding of his point of view, empathised where he could, and then discussed the advantages and disadvantages of taking medication with his brother in terms of the way the brother saw things, since he didn't believe he was ill at all but he could begin to hope medication would help him hold down a job and stop his family nagging him, then his attitudes began to change.
At the time Dr Amador wrote the book where he describes all these things, his brother still hadn't got a job, but he hadn't given up hope. He'd started taking medication in the hope it would keep him out of the hospital, though at first, he thought the reason it would do that would be just because it would satisfy his family so they wouldn't force him to go there.
After some time on the medication, though, he noticed he felt better on it, and at the time Dr Amador wrote the book, the brother had come to realise he did have a mental illness after all, and had started telling people he had schizoaffective disorder. When people asked him why he took medication, instead of saying it was to keep his family happy or something, he started saying it helped with the voices and made him less paranoid. His insights grew out of his discussions with Dr Amador and also with various therapists.
The medication did partly help him achieve what he wanted to in life. It did help him stay out of the hospital. He had been in it about five times in the previous five years since he'd started taking his medication much more regularly, but only for a few days at a time, and always voluntarily. Before he started taking medication regularly, He'd been in the hospital about four times a year, and always for over two weeks at a time. So there was quite a difference.
He'd wanted a job partly because he wanted spending money. Dr Amador provided him with pocket money as a kind of bribe to stay on medication, because he gave him a little amount every day, provided he attended a treatment program, and provided he didn't get argumentative when he didn't go there for a few days and didn't get the money.
The brother was angry with the arrangement at first, because it felt as if he was being treated like a baby. Instead of arguing, Dr Amador listened to his brother's concerns and empathised with the way he felt, since after all, it wasn't the kind of arrangement you'd normally make with an adult. He did feel guilty about doing it. Dr Amador apologised for having a different opinion to the one his brother was expressing, but explained he believed it was really important that his brother stayed in treatment and that he was worried that if he didn't, things would get worse and he'd end up in the hospital again.
His brother wanted him to give him a week's supply of money at a time, but he refused, because he knew he could do reckless things with it like spending it all on beer which made his schizophrenia symptoms worse, or going hitchhiking to who knows where. He told his brother he was worried those things might happen if he gave him a larger amount. His brother didn't think he had anything to worry about. Instead of arguing, and trying to prove he was right by bringing up all the times in the past when his brother had done reckless or foolish things with his money or got into trouble, Dr Amador said that whether his worries were justified or not, he couldn't help being worried, so he asked if they could agree to disagree about whether there was cause for his worries, but asked his brother if he could work with him because he cared that he was worrying and would want to ease his worries.
Then they made a compromise. The brother found the treatment program really boring, so staying there all day was tiresome. Dr Amador showed he understood how his brother felt, because he knew his brother found it really boring and could understand why. He'd have been really bored himself. His brother asked if he could have the money if he just went there in the morning to pick up the money and speak to his case worker for a few minutes, rather than staying all day. Dr Amador agreed.
It turned out that once the brother went there, he often stayed for several hours after that.
The brother was a lot more optimistic about being able to get a job in the near future than Dr Amador was, but Dr Amador didn't focus on that point of disagreement, only mentioning it when he was directly asked his opinion. Otherwise, he focused on talking about what his brother would have to do to get a job. He empathised with his brother's frustrations at not having one, and often asked him to try and work out the reasons he couldn't keep the jobs he found. He'd always worked for a few days in a job, and then been fired or just stopped going.
He always had irrational explanations for this. Dr Amador didn't dispute them, or tell him straight that the reason he couldn't keep a job was because he hadn't been taking his medication and so his symptoms were getting in the way. Instead, he talked about the idea of taking medication as if it was a theory he had that he believed was right but that he was willing to be proved wrong about. So instead of telling his brother he needed to be on medication, he'd ask him whether he wanted to know what he thought, and when he said yes, he'd say things like,
"Whatever else might be happening at the time you lose your jobs, isn't it true that it's hard to work when you're feeling anxious and hearing voices?"
He said that kind of thing quite a few times. His brother knew the medication helped stop the voices and made him less paranoid, so talking like that eventually helped him to start to become convinced that it was in fact easier to work when he wasn't feeling so paranoid or hearing voices so the medication would in fact help him hold down a job.
It took a while before he started to work out that his symptoms did have something to do with losing his jobs, and that the medication would help. But at least he was prepared to consider the possibility, because Dr Amador had stopped arguing with him so he didn't go onto the defensive to try to argue that there was nothing wrong with him; and instead of telling him he needed to be on medication, which had annoyed him because he didn't like being told what to do, Dr Amador had started talking about the medication as if he personally believed it was a good thing that would help his brother, but that he was willing to be proved right or wrong about depending on further evidence, which they would come up with together, by the brother experimenting with taking the medication regularly to see if it turned out that he could keep a job for longer when he was on it.
Dr Amador says a lot of other unexpected benefits came out of him and his brother forming a partnership and treatment agreement. Their respect for one another grew, and they began to enjoy each other's company a lot more and be able to laugh and joke together.
The woman who'd had schizophrenia for twenty years and had hardly been able to hold down a job in all that time also eventually decided taking medication was a good thing. She didn't come to believe she was ill, but did come to realise medication stopped her hearing voices and talking to herself out loud at work in front of people.
It took her some time to come to believe it though. She had agreed that two advantages of taking medication were that it would mean she wouldn't have to stay in the hospital, and that her parents wouldn't argue with her so much if she took it; but those incentives weren't enough on their own to make her take it. So she stopped not long after she came out of hospital after Dr Amador had had the talk with her about the advantages and disadvantages of taking it. She got a job working at the check-out of a shop, but she was fired after only a few days for talking to herself out loud in front of customers.
When she was next in hospital, five months after her last stay, Dr Amador discussed that with her. He asked her if she'd been thinking any more about the advantages and disadvantages of taking medication, and had got any closer to working out whether medication would help her hold down a job.
She said she'd lost the list of advantages and disadvantages. That was allright, because he had a copy. She still didn't recognise the connection between her not taking medication and talking to herself and hearing voices, so she didn't recognise the connection between taking it and being able to keep a job.
She said she'd stopped taking the medication at the time she lost the job, because she "didn't need it any more". Dr Amador asked her if she remembered he'd put being able to hold down a job as one of the advantages of taking medication before with a question mark. He asked her if she'd had any more thoughts about whether it would be a definite advantage.
She said that though it was true she wasn't taking the medication when she was fired, she still wasn't sure whether the medication had anything to do with it.
He asked her if she'd carry on keeping an open mind to the possibility that medication helped her stay in work, like a scientist investigating whether something was true. She said she would.
The woman was hospitalised again three months later. She hadn't had a job while she was out of the hospital, but she was more willing to seriously consider the possibility that taking medication would help her stay in work, and she admitted that not taking it meant she would talk to herself more.
Her family said that one of the problems she had at work was talking to the voices she heard when she wasn't on medication. Dr Amador asked her what she thought other people must think of her when she was doing that, and she thought about it and said they must think she was "nuts". He hoped thinking about that would be a step towards her realising medication would help her keep down a job after all, so he asked her a further question that he hoped might help her realise it would be of benefit to her. He asked if she'd been talking to herself and hearing voices the last time she was fired. She said yes.
She still didn't make the connection and realise medication would help her stay in a job, but her mind was becoming more open to the possibility. It took three hospitalisations and encouragement from her outpatient psychiatrist and her family, but eventually, she came to agree that taking medication would very likely help her work.
After that, her psychiatrist and family kept gently reminding her of that advantage to taking medication, which she herself now believed in so she'd agree rather than arguing. She still didn't believe she was ill. But she agreed to take the medication despite that. She managed to stay out of the hospital for about 20 months after that! With the help of her family, she managed to get her job back at the shop, agreeing to the requirement that a condition of having it was that she took medication. Luckily for her, the manager had some experience of mental illness in his family and wanted to help.
The last story Dr Amador uses to illustrate how the techniques he describes can help people with schizophrenia or other serious mental illness stay on medication despite them not believing at first that they're ill, is the story of someone who had bipolar disorder. She was a mother with two young children.
She'd previously responded to her husband's concerns that she go on medication to control her manic moods by telling him she wasn't sick any more and he was the one with the problem, not her, and that it was time he stopped hassling her and trying to control her.
But after he'd virtually dragged her into the psychiatric hospital where she ended up staying for a while to get treatment for a manic episode, she did show a bit more insight into her illness, though not as much as some people. She said she was emotionally unstable, and she knew she would "lose it" sometimes and get too grandiose and she had to be careful then, but she put it down to being creative. She said her family thought she was a manic depressive and needed to take lithium, but she wasn't sure if she did herself.
During her last manic episode, she had taken her children on a three-day road trip. Her husband had been especially worried the first evening, because she hadn't told him where they were going. She did phone up late in the evening, to tell him she was taking them to the top of a mountain, because she wanted them to experience the same spiritual awakening as she had, and because God had instructed her to take them there, where he would come to them.
Her husband realised that what was really happening was that she was having a manic episode. He realised it more quickly than he had the times before in their marriage when she'd had manic episodes, because now he was more used to them. He begged her to come home on the phone, but she wouldn't, and when he told her he thought she was becoming sick, she just hung up the phone.
He immediately called the local police, but they said there was not much they could do except look out for her car. They suggested he call the parks department in the area where she was headed. With the help of her psychiatrist, he managed to persuade the park rangers to stop his wife when she came in.
He flew out so he'd be there in time, and met her. After some time spent both trying to use persuasion and threats that they'd make her go to a psychiatric hospital against her will if they thought it was necessary, she agreed to come back to her home area and go to hospital there.
The drive home was stressful, amid the children's fights and tantrums and his wife's speeded-up talkativeness.
They went to the psychiatric hospital, where she was admitted and stayed for three weeks before she was considered well enough to leave.
The doctor discussing her release with her and her husband said she'd improved a lot from when she was brought in; then, she wasn't sleeping much, her thoughts were racing and her speech "pressured", she was on the one hand euphoric, but prone to become very easily irritated, and she had strange supernatural beliefs about God and some supposed supernatural abilities she believed he'd given her. But her mood had since stabilised.
The trouble was, she thought of medication as if it was like antibiotics, that could be taken while you experience symptoms, but didn't need to be taken once they went away. She had a hard time thinking of psychiatric medication as something that would have to be taken for life. So she didn't want to take her medication any more. She told them she didn't want to take it for more than a month.
The doctor didn't want to make it seem as if he was trying to force her to take it, so he said he'd like her to, but it was ultimately up to her, since she was the boss. She said if that was true, how come she'd ended up in hospital when she hadn't wanted to go.
The doctor said that when her symptoms flared up, she'd lost a lot of control. She'd done things that had worried a lot of people and caused them to take control away from her because of that; but now she'd got the illness under control, she was in charge of her life again.
Her and her husband at first got the mistaken impression that the doctor was saying it was perfectly fine if she didn't take the medication. That worried her husband, because he knew if she went off the medication her symptoms would flare up again. But the doctor said what he was really saying was that it was her choice, but if she didn't want to have another flare-up of symptoms or get depressed, she would have to take the medication. Still, the decision was up to her. She just needed to know that whatever choice she made, there would be consequences.
She didn't like the sound of that. He asked her why she didn't think she needed to take her medication any more, and she said that since she felt better, she assumed it must have cured her.
The doctor suggested they make a deal, that would help her to find out whether that was true. He suggested that she stay on the medication for six months, and then she could try weaning herself off it to see what happened, although he wouldn't have any part of it unless they were meeting regularly.
She asked him why he'd be prepared to make a deal like that, and he said it was because he knew that because she ultimately had the choice as to whether to take her medication or not, she wouldn't do it unless she was sure it was doing her good. There was the possibility she was right and she didn't need it, but he believed she would. He would be willing for her to do an experiment with reducing it, but he wanted to make two conditions. Only two though. While she was reducing her dose under his supervision, he wanted her to keep a diary every day of whether her mood and thoughts and behaviour were changing, so she would have an understanding of what any consequences of coming off medication were, not only for her but for her family. And he wanted to see her regularly during that time to see how things were going.
She agreed to the deal, and they wrote it down so they'd remember it. She did stay on her medication for the six months till they agreed the experiment could begin.
Since the woman had enough insight into her condition that she would be able to tell if her symptoms of grandiosity, fast-paced speech, insomnia and euphoria were coming back, she would be able to write about them in her diary.
She was seeing the doctor once every week as they'd agreed, and her husband was also coming to some of the meetings. He also kept a diary of what happened when she went off her medication.
After two weeks on a lower dose of lithium, the woman herself recorded in her diary that she was sleeping less and not feeling tired. She also said her husband thought she was getting "hyper" and talking more than usual. When asked if she agreed with her husband, she reluctantly said yes.
The experiment lasted another two weeks, and during that time, she became more hyper, and started having grandiose thoughts.
Her husband asked if he could come with her to her next meeting with the doctor, and she agreed. During the meeting, she admitted she was getting sick again, and said she was anxious about getting out of control again; and she asked to have her medication dose raised again.
Neither her husband nor the doctor said anything like "I told you so", and they didn't tell her it was conclusive proof that she'd have to take the medication for the rest of her life, so she felt free to try the experiment again if she wanted. She was treated in such a way that she felt respected and understood, and felt confident that if she did want to try to go off the medication again, they would both help her in the way they had before.
She did try one more time after that to go off her medication. The experiment was more worrying for her husband and the doctor that time, because she stayed off it for five months. However, she did faithfully see the doctor every week and keep the diary, and as soon as she felt her symptoms returning, she asked to go on the drugs again.
She'd kept up her visits with the doctor, and there hadn't been any other problems with her taking medication in the four years since the doctor had made the deal with her.
Here are some things the book Family Work For Schizophrenia says again:
One way some people have found useful of reducing anger and arguments is to try to remember to phrase what they say differently. Making a family agreement to all try to do that, and reminding each other when anyone forgets, might help reduce tension in the atmosphere.
The way it can be done is that instead of making accusations or belittling comments, you say what you'd like to change. So, for instance, instead of saying, "I hate the way you're so lazy", which doesn't tell the person you're talking to exactly what you don't like about their behaviour so they might not be much the wiser, you decide exactly what you'd like to change about their behaviour and tell them that instead. So, for instance, you might say, "Could you help me with the washing-up every evening and clean the bathroom every Saturday morning?"
Instead of saying, "I can't stand living with you any more", you might say, "I want there to be some changes around here to make it easier for us to live together. I'll be happier if you can cut down the amount you drink. Is there any reason you're not happy to do that?"
And so on.
When things have calmed down after a violent incident, talking about it might help increase the motivation to try to make sure it doesn't happen again. If the victim talks about how upset they were and the perpetrator talks about what triggered it off, trying not to speak in a blaming way, then it might increase consideration between family members; and if you can work out what kinds of things trigger off the violence, perhaps you can work out how to avoid them.
If the person with schizophrenia can give a warning of feeling angry or violent, then maybe steps can be taken to defuse their tension, such as suggesting they go out for a walk or go to their room for a while. If it signals a possible relapse of symptoms, then maybe help can be organised.
Though over-protectiveness in a parent might go a long way back, perhaps to when the person with schizophrenia had a serious illness as a child or was slow to develop, or had other problems, so it might be a hard habit to break, now the person's an adult, it's best to start treating them as if they're capable of doing most things on their own and being independent, apart from the times when they relapse and clearly need more help. You might be so emotionally attached to each other that it's difficult to break away. But when you have, it might decrease anxiety for both of you, since you'll both be more confident they're better able to rely on themselves than they might seem sometimes. So if you gradually start asking them to do more things on their own, they might well end up feeling more independent and capable and so having better self-esteem, and you might feel more confident in their abilities, so you might not feel so anxious about whether they can cope on their own. So you may well both benefit.
If they don't like the idea that you want them to do more and more for themselves over time and be less reliant on you, you could show them there's a need for it, by pointing out that there will be a time when you're no longer in the land of the living, and you need to be fairly confident they're going to be able to look after themselves before you go, otherwise you might spend your last days worrying that they won't have anyone to look after them, and they might suffer if they haven't got anyone, so the more they've learned to rely on themselves beforehand, the better. This kind of explanation might be especially useful where they've become too demanding and it's difficult to refuse their demands without them getting angry.
They probably won't like relying more on themselves at first and might complain; but the more they get to look after themselves, the more confident they'll probably become in their abilities, and the less anxious they'll be about being able to cope on their own.
It's best if their learning to do more for themselves is gradual, so they don't feel overwhelmed by being asked to do too much at once; but progress can be steady. If they're praised for what they do achieve, they might become enthusiastic to achieve more. Then that might well be its own reward, since not contributing anything meaningful to the family might be making them feel useless, and doing more might well give them a pride in their abilities and achievements that boosts their self-esteem and confidence in themselves.
It might take some time before they've recovered enough from their illness to be able to do all the things someone without schizophrenia could do; but they could still do things that give them a sense of worth. For instance, if they can't yet get a paid job, they might still be able to do things around the house, and perhaps have creative talents they could develop to make things they could give away as gifts, or display around the house, or sell at fetes and the like to get a bit of money for themselves.
You might have real concerns about separating yourself more from them and allowing them to do more on their own, such as that they'll leave home and get themselves on drugs and end up living on the streets if left to themselves, or that they'll overdose on medication if you're not there to supervise them, or that they'll damage the home if left home alone, or that they won't even be able to cross a busy road without risking getting hurt if allowed to travel anywhere on their own, and so on. Hopefully their own confidence in themselves and your own confidence in them will increase if they gradually get more and more practice at being self-reliant. And you could gradually give them longer and longer times on their own, perhaps starting with half an hour, and working up to longer periods alone, to see if anything worrying happens, and to help reassure both of you that they'll cope, and give them practice at coping.
Also, it might help to think about how high the probability is that something bad like that will happen. Is there a high probability of it happening, or is it possible that your fears are exaggerated?
If something bad does happen to them though, you'll be being unfair on yourself if you hold yourself responsible, since after all, you're not responsible for them having the illness, and they'll be able to take some responsibility for what they do despite being ill.
You could use the times when you're giving the person with schizophrenia practice at being on their own to go out and take some well-earned relaxation time. Parents can start to enjoy themselves again as a couple. A person looking after a relative with schizophrenia on their own could contact old friends and any relatives they get on with who live nearby, and try to arrange to go out for a little bit of fun with them every now and then.
While you're out, you could give the person with schizophrenia some kind of creative task to do on their own, or ask them to do a task that needs doing around the house, to increase their sense of confidence in themselves and their feeling of achievement.
As you get more confident about going out and leaving them by themselves for longer and longer, you might be able to take up old hobbies again or go for new ones you like the sound of, or even take some kind of job, whether part or full-time, if you gave up work to look after the person with schizophrenia.
You might be scared you'll be rejected by people who find out you've got a child with schizophrenia. You might find a bit of that, but quite a lot of people you meet might be sympathetic. Perhaps you could test the water by telling one or two people at a time and seeing how it goes.
The person with schizophrenia themselves might have to take the same approach, telling people they've got schizophrenia one or two at a time, to see what people's reactions are.
You might be scared of losing your relationship with them once they begin to separate from you; but then, consider that every parent has to adjust to growing apart from their child as they grow to be an adult, and all children need to grow apart from their parents so they can be healthily independent, although someone with schizophrenia is bound to achieve it later than most.
But becoming independent from each other doesn't have to mean the relationship ends. It can mean a new, more adult relationship is formed that's just as enjoyable, if a bit different.
Perhaps you can join a support group for people with relatives with schizophrenia, where you can talk to other people about how they coped with the whole separation business. People who've been through it might be able to be reassuring, and even speak positively about the benefits of their new kind of relationship.
Perhaps other people in your family are avoiding you because they feel awkward about you having a child with schizophrenia. It may be that the more they're educated about what it's really like, the better they'll understand and the more they'll want to be with you after all. So perhaps you could try saying you've found out some interesting new information about schizophrenia and tell them something about it, and see how they react. It would be good if they came around to being supportive, because there might be things they can help with.
Some people can find it helpful to make an actual agreement with the person with severe mental illness, maybe in writing, about things you'll expect them to do for themselves from now on or that you're not willing to do for them any more, and also things you promise not to do because they'd prefer you didn't. It could be like a bargain.
For instance, imagine you've been checking to see if their room's tidy three times a week and nagging them to clear it up, and it annoys them; but for your part, you feel over-burdened because they keep asking you to drive them to the shops and wait around till they've finished looking around and bought what they want. In the agreement, you might make a bargain that you'll only check on their room once a fortnight from now on, and for their part, they'll walk to the shops, since they're nearby anyway.
Agreements like that can be hard to keep up sometimes because the person might try to persuade you to do what they want still, or even use threats; or you yourself might find it irksome not to do what they've said they'd rather you didn't do any more. If you find it hard to be strict about not agreeing to the demands they've been making that you've said you won't agree to any more because you feel guilty about asking them to do more for themselves when they're ill, remember you can't blame yourself for their illness, even if part of what caused it was something to do with genes passed on by you; and remember that actually, the more they can do for themselves, the more confident they'll grow in themselves, and the less their symptoms are likely to flare up.
Another thing that can contribute to relaxing the atmosphere in families is when they look out for good things the others have done and express appreciation for them. And you could think about what you like about each other and comment on that. One technique is to have a compliment box where everyone writes something nice about others in the family every day, whether that's something nice about their personality, their appearance, something they've achieved, or thanks for something they did, and they put it in a cardboard box, and every evening it's opened and the compliments are read.
It's best if you don't expect too big a change in one go. Asking them to gradually take on more and more things themselves will be better than expecting big changes, because it'll reduce the risk of them taking on too much in one go, failing, and becoming discouraged.
So first of all, you could ask them to do things you're sure they can actually do, such as emptying the rubbish bin once a week or putting their clothes in the wash instead of leaving them on the floor in their room.
You might think they're not doing the job you asked them to do properly so it's more efficient for you to just do it yourself. But it's best if they learn to do things themselves so they can be more independent.
On the other hand, if they're doing things to a satisfactory standard but simply not the way you'd like them to do them or to a standard of perfection you'd like, then just leaving them to it can be best, or sometimes they can get discouraged and stop doing things for themselves altogether.
It won't necessarily be their fault if they're not doing things to as high a standard as you'd like; after all, some impairments stay around for a while after the main psychosis symptoms have died down. So it's worth being patient with them, because if they're genuinely not coming up to an acceptable standard, they can learn; but if they are, but just not as high a standard as you'd ideally like, then it'll still be good progress that they're managing it. And it may well be that the more practice they get at doing things on their own, the more their standard will improve.
If they're doing things to a fairly high standard but simply not in the way you'd like, because you're used to doing things another way, it can be best to just let them do things their way, since after all, no harm's coming from it.
It can be a good thing if the person with severe mental illness can develop a fairly healthy social life with people of their own age. It might be a bit difficult, because they might sometimes behave strangely or not be very good in social situations. Going to a day centre or drop-in centre can sometimes help, though it can be even better if the environment's as normal as possible.
If they had a hobby before the illness came on, maybe they could try taking it up again, especially if they were enjoying themselves with other people who shared the same interests then. Or some kind of educational classes might be good and enjoyable for them as well.
The book Family Work For Schizophrenia says it's common for people with a child with schizophrenia to experience feelings of grief and loss, for two reasons: They're grieving the loss of the person their child used to be before they developed the mental illness, and they're grieving the loss of the hopes and dreams the person had and that they had for the person, when they expected them to be able to be much more successful in life than they probably will be now.
It might be difficult for the person to get a job, or provide company for others, or take care of household and other responsibilities, partly because what are called "negative symptoms" of schizophrenia, like lack of motivation, apathy, and withdrawal from social situations, can last a lot longer than the more obvious symptoms of the illness.
Partly because the person might not provide company for the family any more, and partly because their behaviour might have changed a lot, the family can feel as if they've lost the person they used to know. And because schizophrenia tends to come on in the late teenage years or early twenties that are crucial for education and when people are just beginning to start out on their careers, all that will have been stopped in its tracks for the person with schizophrenia, so many parents might feel a sense of grief for the successful person their child could have been.
Some parents don't feel any grief, because their expectations of the person with severe mental illness are still what they used to be, so they're really too high. The person with schizophrenia might also have high expectations, so they try hard to achieve what they would have been able to achieve if their illness hadn't come on, and the effort and the failure is stressful and they get flare-ups of symptoms because of it. So they lose their confidence, and both child and parents can start to feel more and more hopeless the more failure there is and the more the stress of trying to succeed brings the symptoms on.
It's unlikely that things really are hopeless though, even if expectations have to be a lot lower than they were. If the person starts off getting practice at doing little things and does more and more complicated tasks as time goes on, though there may be some steps backwards when symptoms flare up, in the end, they might at least achieve enough to do something worthwhile with their lives that you can be pleased about.
It might well be worth your while planning out how you could start giving them little tasks to do and gradually increase their complexity over time.
It may be that there are some things the person with schizophrenia will never be able to do and will always need help with. But there might be other things they become very good at.
Going straight into a job or education after having not done anything like that for a long time can be stressful, and if not prepared for in a way that relieves some of the stress, it can cause relapse in a person with schizophrenia. There are ways of rehearsing some of the things it'll be necessary to do to keep a job, before an attempt is made to look for one.
Sometimes, the person with schizophrenia might not even be interested in getting a job. Suggestions can be made about different kinds of jobs to tempt them into thinking about anything they like the sound of. New ideas can be gained from relatives' support groups where other people might tell you about kinds of work their own relatives with schizophrenia have tried, enjoyed and managed to keep.Ideas can range, for example, from things involving woodwork, to working in a library, to a variety of other things. Voluntary work can be easier to start off with than paid work, because it often doesn't matter so much if the person doesn't turn up, and it can be part-time.
Perhaps they could also try evening classes, or perhaps there are some courses that take place during the day they'd enjoy.
The lack of motivation caused by the schizophrenia might make it harder for them to stick to anything. It might well be easier if they enjoy what they're doing though.
There are a number of skills they'll need to be able to hold down a job or stick to an education class which aren't directly related to what they'll be doing or learning as part of the work or course. They can all be practised before they start looking for something like that. But it'll only really be practical if they haven't had a flare-up of symptoms for a while so they can stick to doing something reliably, and if everyone in the family agrees to what they're doing so they're willing to support them and help them solve problems when they need it.
The skills they'll need that they could gradually practise doing more of before they start looking for a course or a job include:
I think there are actually treatment programs connected to some psychiatric hospitals that can help people practice skills like that. It might be worth investigating whether there are some in your area, besides thinking about ways you might be able to help the person build up some of those skills in the family.
One way of helping them build up some of the skills they'll need in the family first before they try for a job or course could be gradually asking them to do more and more things around the house, maybe things that won't take long at all at first, moving gradually on to things they'll take longer doing. Jobs like that may well help them practise concentrating on things, being self-reliant, and taking responsibility for their actions, and getting used to a routine.
Also, they can practise getting up for work by getting up early in the morning to do certain tasks you ask them to do. If they're used to getting up very late, you could gradually ask them to get up earlier and earlier at times you decide on.
You might also be able to get them into day centres where they can do industrial-type work or something educational, so they can practise time keeping skills, sticking to a job outside the home and keeping to a routine. So it'll be good practise for a paid job.
If they're discouraged by their slow progress, you can remind them how much better they are now than they were at a time in the past you can choose when their symptoms were much worse.
When they do finally go for something, to prevent them being so discouraged if they fail, it can be treated as if it's an experiment, a trial job or course, to see how they do. If they fail, reasons can be discussed and solutions talked over, to make it less likely they'll fail next time.
Also, it can be best again if they start off slowly, by trying out a part-time job or a part-time course, to get them used to the new challenges of an outside job or education. If they find they do well, they can move onto full-time work or education with less risk of failure and less stress.
It might also be that they need to go into a less high-powered and demanding job than they had before they got schizophrenia, because they've lost some of their skills or because some of the symptoms of the illness make it harder to work. But there is at least hope that once they start back on the road to a career, they will gradually be able to work their way up higher than the place they start.
If they're severely disabled by their illness, or the unemployment in the country is high, it might be that they don't find a paid job at all. They might be able to still do voluntary work of some kind though, or help a lot around the house, or do some kind of work at a day centre.
One other thing that'll need to happen for them to be able to hold down a job or stick to a class is if you or they can recognise early signs of their symptoms getting worse and do something to stop them in their tracks, such as going to the doctor and having their dose of medication increased a bit for a little while.
The book says it's quite common for people with schizophrenia to take drugs, partly to try and relieve certain symptoms; but they can make some symptoms worse.
It says some people who get schizophrenia after taking certain soft drugs can get blamed by their families, who think the drugs probably caused it. But though some drugs can bring on symptoms, a person has to already have a vulnerability to the illness before they can do that.
But it says it can be especially risky to take illicit drugs if you've got schizophrenia.
It says people with schizophrenia often enjoy going to pubs, because they can be around people who are chatting in a friendly environment without feeling pressured to join in. The trouble is that they'll be tempted to drink, perhaps a lot, especially if their friends are drinking and they don't want to feel left out. Alcohol can make the sedative effects of tranquillisers more powerful, and have other undesirable effects. It says a few people with schizophrenia can become violent when asking for money for drink or when they're drunk. Well, drink makes lots of people violent.
It says some relatives are so worried about the schizophrenic family member's drinking that they'll try to make them stop. The trouble is that that can cause conflict so it can aggravate the situation rather than helping.
It might not be necessary for them to give up drink altogether. Once the risks of drinks and illicit drugs have been explained to them, they may sometimes be willing to experiment with reducing the amount they drink, and drinking different amounts to see how much they can drink without suffering ill effects. For instance, they might try having half pints instead of pints, and drinking low alcohol beer.
It says smoking in a person with schizophrenia can also be a worry for their parents, not only because it could damage their physical health, but because they can often do things that can be hazardous or annoying, like smoking in bed with the risk that they'll drop off to sleep and drop a lit cigarette which will catch the place on fire, or because they make a mess by leaving cigarette butts and ash all over the place.
The book says people with schizophrenia often say they smoke because they're bored. It says it can be difficult for them to give up, because they'll often be in an environment where lots of people smoke heavily and it's seen as just a natural part of socialising, if they're with other people with schizophrenia a lot such as in hospital. Also, naturally there's the issue with addiction.
So it says an easier thing to do than trying to solve the problems of them smoking in bed and things like that by trying to get them to give up smoking, is to ask them not to smoke at particular times, such as when they're in bed, especially if they're taking tranquillisers.
You could also ask them to empty ashtrays regularly and always use them. Perhaps they'll keep needing to be asked. Perhaps if you give them specific times during the week to empty them and remind them then for a while, they'll get more into the habit than if you just leave them to decide when to empty them on their own, in which case, like anyone who doesn't want to do any more work than they have to, they might just forget, or leave them till they're as full as they can possibly get, and if that means sometimes cigarette butts fall off the top, they might not mind.
The book says some people with schizophrenia drink a huge amount of tea and coffee. While that might seem harmless, the amount of caffeine they end up taking in can have noticeable effects on them. Too much caffeine can cause nervousness, shakiness, restlessness and excitement, and also sleep problems. It can become difficult to separate the effects of too much caffeine from anxiety, or from what the schizophrenia is doing. So it's best to cut down.
If you can find a support group in your area, or one or two good ones online, then they could be a very good source of emotional support and advice.
On the other hand, some people's stories might be discouraging, such as if they've had to look after a relative with schizophrenia for years who's only got worse. Then again, perhaps those people could benefit from the advice of others, and it'll lead to improvements in their own situation.
The book Family Work For Schizophrenia lists some advantages and disadvantages of being in a support group with other relatives of people with severe mental illness:
Online support groups avoid the problems of taking a specific time out every week. And since you'll be anonymous, you might feel freer to talk.
As for the problem of the relative with schizophrenia feeling left out or suspicious, there are things you can say that might reassure them, for instance you can say to them that relatives need help too, not just the person with the illness; it's useful to meet with people who understand the problem; and that support groups don't discuss the people with schizophrenia so much as give ideas to the relatives about how to cope better.
The person with schizophrenia might ask all kinds of questions about what it was like and what you said there afterwards. They themselves might be reassured if you give them some ideas you've picked up and tell them what you were told about how other people with schizophrenia are coping.
And all that weirdness isn’t just going on outside. It’s in you too, right now, growing in the dark like magic mushrooms. Call it the Thing in the Cellar. Call it the Blow Lunch Factor. Call it the Loony Tunes File. I think of it as my private dinosaur, huge, slimy, and mindless, stumbling around in the stinking swamp of my subconscious, never finding a tar pit big enough to hold it.
--Stephen King, Rage
Dr Amador, author of the book I Am Not Sick I Don't Need Help, says that if the person with severe mental illness fails to respond positively to the techniques he recommends, or if they're posing such a problem right now that you fear there's a serious risk of something bad happening soon, it might be best to try to get them into a psychiatric hospital.
He says it isn't always easy to tell at what point a person's so badly in need of help they need to go to hospital, and some signs a person does will differ for different people. And he says it certainly isn't easy on the emotions to get the person committed to a hospital when you know they'll resent you or be upset with you for it. But he gives some guidelines on when a person really should be taken into hospital, and says that in his experience, although it might take some time for them to come around to accepting your actions, people with severe mental illness often look back on the time they were made to go into a psychiatric hospital and are grateful it happened, because of the improvements it led to in their condition.
You might feel bad at first, and so might they, because it seems hospitalisation will rob them of control over their life. But if it starts the process that helps them to stay on medication regularly, then long-term, it'll mean it helps them get more control over their life. At least enough control to stay out of hospital in future, because they won't be relapsing so much. Anyone would be frightened by having decisions about their treatment completely taken out of their hands; but once their symptoms are under control, they'll have a fighting chance of keeping them that way, so it's much less likely to happen in future.
Dr Amador says that when you commit a relative against their will to being in a psychiatric hospital, you might worry it'll cause such a breach of trust that the relationship will take a long time to recover if it ever does. But he says that if the person becomes aware that even if they don't think you should have had them put in hospital, you did what you did out of concern and love for them, and you're supportive of them throughout, then they'll quite likely understand that even if you did the wrong thing, as they might be sure you did at first, you at least did it because you had good intentions.
He says he got his brother put in hospital against his will several times, but after about the fourth time, his brother came to see his actions in calling the police and his psychiatrists to get him put in hospital as an expression of love for him. He came to think Dr Amador believed he was helping him, even though he (the brother) didn't think he needed help. The brother coming to realise that Dr Amador was at least well-intentioned was a big consolation for both of them. It was several more years before the brother came to realise he was actually ill and needed the treatment.
You might be scared that by starting the process that'll get them confined to a psychiatric hospital, you're sentencing them to being sent somewhere truly horrifying where they're liable to be treated harshly. But conditions in psychiatric hospitals may well not be what they used to be at all. There may well be information on the Internet you can look up about what your local psychiatric hospitals are like, and what you can expect to happen when you seek help.
Not getting the person committed to a psychiatric hospital can be more dangerous than getting them committed, as illustrated by the many mentally ill people who go on to be homeless and to get into substance abuse that makes their illness worse, and crime.
You don't have to think of getting them committed against their will for a while to a psychiatric hospital as some terrible thing that violates human rights, since the alternatives could be even worse for someone's human rights; and after all, Dr Amador says, if the person had a physical illness like diabetes rather than a mental illness, you might well learn up everything you could about their disease and what needed to be done to control it, and keep emergency medical numbers by the phone, so if they started to lose consciousness and became confused and disorientated, you could have them taken to hospital whether they wanted to go or not. And you wouldn't feel guilty about doing it or unsure whether you should.
Dr Amador says the laws on when and how someone can get a relative with severe mental illness committed to a psychiatric hospital differ from place to place; but there are certain things that are recognised as things it's so difficult to cope with without help that outside help will often be forthcoming if help is sought at the time, though the form it might take might differ. The main one is if they're obviously about to hurt themselves or someone else. He says that's the most common legal standard for getting someone committed against their will to a psychiatric hospital.
He says the therapist or doctor the person with mental illness has been working with will often be the first person to contact if they're becoming out of control, unless the situation's so serious that it would be more appropriate to call the police. He says taking your relative to the emergency department of an ordinary hospital can also be the first step to getting the help you need.
He says you might feel hesitant to call the police on the person, as if it's just not fair to do that. But he says if they're getting out of control, it might be the best thing. He says if you had a five-year-old throwing a fierce tantrum where he was threatening to harm you, you might feel the need to restrain him and send him to his room. It's more difficult to do that kind of thing with an out-of-control adult. But the police are trained in techniques of restraining people without hurting them.
If the person's calmed down by the time the police come, it might be difficult for the police to know if anything bad really happened; so tell them in detail what happened, and if the person damaged any property or any such thing before the police arrived, don't tidy things up; let the police see things the way they were when the person did what they did. And if they made threats, don't be hesitant to tell the police what they were. If it helps in getting them the treatment they need, then long-term, it'll be best, even if it feels as if you're betraying a loved one's trust at the time. Be sure to tell the police the person has a history of serious mental illness and you're afraid for their safety; and tell them the person needs to be taken to a psychiatric hospital, if they don't offer to take them there anyway. If they're reluctant to, Dr Amador recommends you ask to speak to their supervisor.
He advises that if you've had the person with schizophrenia committed to a psychiatric hospital in the past, you could think back to what symptoms they were displaying that turned out to be signs their behaviour was getting out of control so they needed to be committed to the hospital, and make a list of the three most worrisome, to help you recognise warning signs in the future you could use to help you decide if you ought to contact their therapist or someone else, and to give you clues that a flare-up of symptoms might happen soon so you're not caught off-guard by them.
He lists things that other families have considered signs that could be serious enough to warrant the person being hospitalised whether they want it or not:
Maybe for you, some of the signs will be different. If they're similar, at least you'll know you're not alone.
Unfortunately, hesitating over whether to have a loved one committed to hospital can mean something worse happens before they're sent there, which is one more thing to think about when deciding whether to try and get them sent to one.
If the person with schizophrenia doesn't get on with their therapist or you don't think the therapist's being helpful, try to find another one instead. Think of yourself as a customer and the therapist as providing a service, rather than them as having the final authority. And stay in touch with other people involved in the case, such as the doctor of the person with schizophrenia, even if the person themselves isn't attending their appointments, because it might be valuable to consult the doctor about what to do.
If a therapist refuses to tell you what goes on in the meetings between them and the person with schizophrenia, or what they've recommended to them, because of ideas about keeping patient confidentiality, it may be possible to negotiate with them about telling you certain things under certain circumstances and informing the patient they'll do that so as not to be breaching their trust if they do; or else you could find another therapist who tells the person with schizophrenia they might want to discuss issues with the family from time to time, so you can be informed about what's being recommended to them and about concerns they're expressing, and so if they do tell you what's being said, it isn't a violation of the person's confidentiality.
Dr Amador recommends that families find out if the nearest hospital to them which has a psychiatric care unit has a mobile crisis team of psychologists who are prepared to come out to see and evaluate the problems of the person with schizophrenia in their own home. They can decide the person needs to be hospitalised, or referred for outpatient treatment, and so on. If you phone the psychiatric department of the hospital and tell them about your concerns, they'll be able to tell you what services they provide.
It's recommended you keep the number of any mobile crisis team or other service handy so you can get to it quickly. Even if you don't need it in the end, it might be reassuring knowing it's there.
If you feel the need to call the police, Dr Amador gives some tips on things to do:
If you do have to put them in hospital where they're made to take medication whether they want to or not, it will naturally mean all the trust and confidence in you they developed will disappear overnight. Despite the fact you'll probably be doing it because you feel sure it's the only chance they have of ever getting better and it's your last resort after you've tried other things - which ideally it should be, they'll probably feel as if you betrayed their trust and you're being unfair, and they won't feel like talking and co-operating with you much after that. It'll be understandable given it's bound not to be a pleasant experience for them. But there are ways to slowly build the trust back up again.
It'll be more difficult if you yourself feel as if they're right that you betrayed their trust. It'll be impossible for you both to build a trusting relationship back up while either of you still have those feelings. So dealing with the feelings early on is very important. Dr Amador suggests ways of doing that:
When the person's first admitted to hospital, they might well be angry with you, and also think you made them go into hospital because you wanted to abandon them. To show them that you weren't just trying to get rid of them and that you do still care about them, visit them often if you can, every day if possible. The visits might be difficult, especially because if they're very ill, they might not be making any sense when they talk. Hospital staff might even advise that you don't visit them at that time because they might think seeing them so ill will upset you. And sometimes, the person with schizophrenia might refuse to see you. But when you can visit them, it might help to calm their feelings and help reassure them you don't want to abandon them. So even if it's for just five minutes every day, just to say you love them, it can help. Or as often as you can.
At the same time, though, make sure to look after your own needs. If the visits to the hospital are a bit distressing or draining, don't feel you have to stay longer than the few minutes necessary to reassure them you still care and haven't abandoned them. Then you could perhaps go and do something special to relax, like going out to dinner with a close friend, going home and putting your feet up in front of a good film, and so on.
Try to take your mind off the hospital visit if you're just worrying over it. Worrying over it, just getting more and more anxious, won't do you any good. So relaxing and refreshing your mind might be a healthier thing to do.
If you want to talk things over with someone though, maybe you could find a friend or even a therapist. Or there might be support groups for people who care for relatives with schizophrenia in your area or online.
Dr Amador recommends you try to find an opportunity to sit down with them and explain why you had to have them put in hospital, either during their stay or when they come out. Try not to make it sound as if you're defensively justifying yourself, but just as if you want them to understand because you care about them.
Dr Amador says there isn't a perfect way to explain yourself to them; but the most important thing is that you're sincere and you take their feelings into account. So he suggests you might say something like,
"I know you feel angry and betrayed, but I would have felt guilty and as if I'd let you down if I hadn't got you into the hospital."
He says the conversation might go a lot better than it would otherwise if you start off by showing you understand something about the way they feel, and apologising for the fact that what you did made them feel the way they do. Don't apologise for what you actually did if it was for their good, because you can't give the impression that you now think you shouldn't have done it. But you can apologise for the fact that it made them feel bad.
So he recommends that perhaps you could start the conversation by saying something like,
"I know you're angry with me; I know you don't think you needed to go into hospital; I'm very sorry that what I did has upset you so much; but I was worried about you."
Even if they don't think they needed to go to hospital, they can still come to forgive you and be interested in building up a friendship again if you talk in terms of you having done what you thought you needed to do whether it was right or wrong. You can keep an open mind to the possibility it was wrong, because after all, who's to say there wasn't a better option; so you don't have to insist you did the right thing, which might well antagonise them; but you can say you felt you were doing the right thing whether you actually were or not. And you can say you believe that getting them hospitalised is the best thing for them when they're doing the kinds of things they did just before it happened, so though you're not sorry you did it, and you'd feel you had to do it again in similar circumstances, you're sorry about how it made them feel, and if something better ever came along, you'd prefer it.
Dr Amador gives a few do's and don'ts about what to say in the conversation you hope will go some way towards mending the relationship:
Here's more of Dr Amador's advice:
You can tell them how much you wish you hadn't felt you had to do what you did, but say you felt sure, rightly or wrongly, that it was the best thing to do at the time.
Think through what you'd like to say to them beforehand, and think about how you'd feel if you were them and it was said to you, so you can get more of an idea if it'll annoy them or appease them, if you'd feel blamed, or if you'd understand more how the person who put you in hospital felt.
Emphasise that you did what you did out of concern for them, whether you were right or wrong. Don't insist you did the right thing. You can say you believe you did the right thing and that you didn't have any other choice; but acknowledge the possibility that there might have been a better option.
You can also explain what you were scared would happen if you didn't have them put in hospital, not in a way that makes it sound as if you're certain it would have happened so it sounds like an accusation, but in a way that puts the emphasis on your own feelings. And try to phrase it in such a way that it'll emphasise the concern you had for their well-being, rather than their actual behaviour. So you mention their behaviour, but say it was your concern about their well-being and future that made you act, not the behaviour itself.
Don't ask them to agree you did the right thing; just ask if they'll try to understand your point of view and forgive you. Tell them how much it would mean to you if they would forgive you and your relationship could be mended.
Even if it means they feel sure you did the wrong thing for a while, try to live with that, if it means they're at least willing to try to understand why you thought you were doing the right thing, which will be much better than if they still feel angry with you.
It might take several conversations before they're willing to forgive and understand your point of view and have stopped feeling angry with you, so try not to get discouraged. It may be that the more you talk, the more they'll come around to understanding your point of view.
If they refuse to speak to you about it, you could write down everything you'd like to say in a letter.
In fact, even if they do seem to understand, you could write them a letter where you carefully explain your point of view and how sorry you are for upsetting them anyway, since having a serious mental illness can make it difficult to remember things.
Even if they don't come around to understanding your point of view and forgiving you, having explained yourself will hopefully make you feel better yourself, and your attitude might well reduce the conflict in the relationship anyway.
Dr Amador advises that you try to make sure you never slip back into old ways of blaming the person with schizophrenia or other serious mental illness for their behaviour, or talking down to them as if you know best. If they feel as if they're a respected part of a partnership rather than someone who feels as if they're always being told what to do and criticised, then they'll be more likely to be encouraged to try new things, like staying on medication more regularly.
Also, there's medication that's longer-lasting that can help them stay on it, such as an injection that can last about a month, rather than pills they have to take every day, so that can help.
So you could ask the doctor in charge of their case about that, and tell them the person tends not to take their medication regularly if it's left up to them so it might be worth trying.
The person won't automatically realise they're ill when they go on medication; but it might be easier to explore it as one possibility with them while they're on it so their symptoms aren't so bad.
Don't try to handle the whole thing without support from others. Carers' support groups could be a valuable source of advice, as well as emotional support. It may also be possible to have a laugh and relax with them for a while which will provide you with a much-needed break.
Also, try not to forget who the person you're caring for is underneath their severe mental illness. They might have qualities you can still appreciate and like; and they'll warm to you more and thus be more open to learning from you if they can tell you think of them as a person, rather than as if their whole identity is the illness. Dr Amador says that after he changed his attitude to his brother, their respect grew for each other, and he recognises his brother as a "kind, smart and creative" person underneath the illness, as he was before it came on.
This article is written slightly differently to most articles. It comes with a very short story about someone finding out information to help people care for relatives and friends with schizophrenia - not a real person, but a representative of others - and the article's presented as if it's what she's found out.
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Since this article's almost certainly too long to read all in one go, if you like the parts of it you do browse, feel free to add it to your favourites and read it bit by bit over the coming days or weeks as you choose, since it's really designed to be taken in as a step-by-step process anyway rather than a one-off. It'll also make it handy to read bits of it again and again, since it's normal for people to forget most of what they read the first time.
Sophie has recently joined the psychology department at a college. She joined to teach about marriage counselling. But one day, she gets a job she didn't expect.
The college are holding an open day for relatives and friends of people with schizophrenia and other severe mental illness. They've arranged for an experienced psychologist to come in and give several lectures on the subject during the day. A few weeks before he's due to speak, however, he says he won't be able to make it.
The college aren't confident of being able to find another speaker at such short notice. But they don't really want to cancel the lectures. So they ask the teaching staff in the psychology department if any of them would be willing to do the lectures.
At first, no one offers to do them. Sophie thinks about it. She hardly knows a thing about schizophrenia, but she's willing to learn up about it and likes a challenge.
She offers to learn all she can about the topic and do the lectures.
The college agrees.
So she gets a couple of books and looks through them, spending a few hours each evening writing notes. She starts to feel sure she'll have enough information to do all the lectures.
She thinks through what to say as she's going along. She's glad she did, as she's thanked by several people at the end of them, who say they found what she said helpful.
Note that if you choose to try out some or all of the recovery techniques described in this article, they may take practice before they begin to work.
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This includes links to articles on depression, phobias and other anxiety problems, marriage difficulties, addiction, anorexia, looking after someone with dementia, coping with unemployment, school and workplace bullying, and several other things.
The articles are written in such a way as to convey the impression that they are not written by an expert, so as to make it clear that the advice should not be followed without question.
The author has a qualification endorsed by the Institute of Psychiatry and has led a group for people recovering from anxiety disorders and done other such things; yet she is not an expert on people's problems, and has simply taken information from books and articles that do come from people more expert in the field.
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