Living with psychosis

• Talking to other people
• Getting information
• Looking after yourself
• Withdrawn behaviour
• Self-neglect
• Depression
• Restlessness, over activity or anxiety
• Food and eating
• Delusions
• Embarrassing behaviour
• Sex and promiscuity
• Alcohol, drugs and medication
• Violent behaviour
• Suicide threats
• Money problems

Talking to other people

Supporting someone who has psychosis can be difficult. Your relative or friend may appear to be different either as a direct result of their symptoms, or because of the side effects of their medication. Their behaviour may be unusual,  irritating and hard to cope with, or at times unreasonable and perhaps frightening.

As a ‘carer’ you may need to give emotional support and offer practical help on a day-to-day basis. Your supporting role may consume your time and be emotionally exhausting. When the person you are supporting first becomes unwell, it may feel as if your world has been turned upside down.

Everyone needs to find their own coping strategies, but it sometimes help if you talk to other people who have been in the same situation as you. They can understand how you feel and share ideas for dealing with difficulties.

There are many carers groups up and down the country, some of them run independently, some of them run by Rethink or other charities, some of them supported by local mental health services. Visit the Rethink website to find out about groups that are local to you, or ask a member of the mental health team supporting your relative or friend about carers groups in your neighbourhood. Your GP may also be able to help.

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Getting information

It may help you to find out information about psychosis and the diagnosis your relative or friend has been given. This will help you understand more about the way he or she is behaving. This in turn may help you be more tolerant and less likely to feel irritated, angry or stressed.

This website contains a lot of information, and there are links to other websites and material that you may find helpful. One of these is a book called Living with Mental Illness, A book for relatives and friends, by Elizabeth Kuipers and Paul Bebbington. Elizabeth Kuipers is a researcher and psychologist who works at the Institute of Psychiatry and at South London and Maudsley NHS Foundation Trust and is involved in this website. The information on this page is based on the book she co-wrote.

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Looking after yourself

People sometimes feel guilty about living their own lives and doing things they enjoy when their relative at home is unwell. It is possible to be extremely caring and supportive to your relative while at the same time maintaining your own life. This is good for both you and for the person you are supporting. It’s important not to do too much for your relative, and to help them to stay as independent as possible.

When people are very ill, they may lose the ability to look after themselves properly, but this is usually temporary. It’s understandable that some people feel over-protective and immerse themselves fully in caring, giving up work and outside interests to do so. In the longer term, it’s much better for both of you if you do keep as much of your own life intact as possible. If your relative needs a lot of support at a particular time, enlist the help of friends and other family members rather than shoulder more responsibility yourself. It’s important that you eat well, get enough sleep and exercise and take care of yourself physically as well as emotionally – by seeing friends and talking to other people who may be able to offer you advice and support. Your local social services department will assess your needs as a ‘carer’ and offer you help which will enable you to look after yourself (see Support for carers page).

Living with someone with psychosis is not always easy. Maintaining your own interests an having time away will help you to cope more effectively and tolerantly with the symptoms of the illness. This means there will less tension in the house and fewer arguments – a calm and supportive atmosphere will help people recover more quickly and stay well.

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Withdrawn behaviour

People with psychosis may lose interest in life. They may become withdrawn and shun social contact, or become hard to talk to. They may have no energy and stay in bed for long periods of time. These are all symptoms of psychosis – your relative is not behaving in this fashion because they are lazy or unfriendly. It is good to encourage them to contribute to the household, but not to expect too much of them. Don’t demand that tasks are completed instantly, or that they are carried out to a high standard, for example. If your relative doesn’t get round to doing the washing up or whatever you have asked them to do, try not to get cross about it, but ask them again to do it next time, and be pleased when they do.

It’s also good to encourage them to go out, whether it be to the shops, on a family outing, or to a day centre. It’s good to include them in family activities, even if they don’t contribute much to the conversation.

People who have had an episode of psychosis may be less communicative than they were before. Their face may also be less mobile and they may seem ‘flat’. They may show less affection for members of the family, and may no longer ask how you are. It may seem they no longer care about you in the same way, and this can be hurtful and confusing, particularly for a parent. It’s important to remember that these are all symptoms of the illness.

Sometimes, however, your relative may appear to be their old self, and then without any reason or warning become withdrawn again. The best thing to do is not to push them for an explanation or reason. Ask if they are all right, and if there is anything you can do to help. If not, or if they don’t answer, talk about something else, or leave them alone for a short while.

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Self-neglect

Some people with psychosis also lose interest in their personal appearance and personal hygiene. Try not to just ‘nag’ your relative to wash and change their clothes. Instead, try to talk about it with them, saying why you are worried about it, and then set up a routine of bathing, washing clothes and changing bed linen on a regular and reasonable basis. Your relative may need reminders and your practical help with personal care, as sometimes these tasks are difficult for someone feeling upset or preoccupied.

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Depression

If your relative or friend becomes depressed, it may help to talk to them and offer sympathy and sensible advice, and to offer practical support on a temporary basis. It’s important not to dismiss people’s fears and worries, but to listen, take them seriously and try to help them put things in perspective.

If a depressed mood continues, encourage your relative or friend to seek help from his or her GP or mental health team. Even if medication is prescribed or talking therapies offered, your relative will still need your help. It is sometimes easier to withdraw emotionally from depressed people, but this can confirm their poor opinion of themselves and make their depression worse.

People who are seriously depressed may need even more support from you. You may need to temporarily take over decision-making and tasks they would normally do for themselves. It’s important not to offer this sort of practical support too quickly, as it may again confirm their own view that they cannot manage and more, and encourage them to give up on day to day tasks. Talk to your GP or mental health team to get advice or discuss the problem with someone on the Rethink National Information and Advice Service (accessed through Rethink’s general information line, 0845 456 0455, Monday to Friday from 10am to 2pm).

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Restlessness, over activity or anxiety

Sometimes people with psychosis find it hard to sit still, or go to sleep. They may pace a room and find it hard to relax. Symptoms of this kind almost always go away as people get better, but may be particularly hard to live with. You could encourage your relative to go for a walk or take some exercise. If they are anxious, it’s important to acknowledge how upset they are, and help them to relax and stay calm.

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Food and eating

You should encourage your relative to eat a sensible, balanced diet and take exercise. This can be difficult. The symptoms of the illness can include loss of energy and lethargy, making it particularly hard to change long-standing patterns. Medication prescribed for psychosis can make people put on weight (see Medication page) and if this happens, mental health professionals may consider prescribing a different drug and/or suggest that your relative is more careful with their diet. Being overweight increases the risk of high blood pressure and developing diabetes. Your relative should have regular physical health care checks from their GP.

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Delusions

It is unhelpful to argue with someone who is expressing strong beliefs about something that is patently untrue. It’s important to remember what they hold to be true at that particular time is true for them, but is also a symptom of psychosis. Try not to be dismissive of what they say. If you deny the truth of their belief, they may think you are no longer to be trusted. If you agree that what they say is true, their conviction may become stronger. The best approach is to agree that your relative believes what he or she says but at the same time make it clear that the experience is not real for you, to sympathise that what they are thinking may be very worrying, for instance, but to say that this has not been your own experience. It is helpful to differentiate between their reality and your reality, without arguing about it.

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Embarrassing behaviour

Sometimes people with psychosis behave in a way that is embarrassing to you – they may shout, laugh inappropriately, talk loudly to themselves, take their clothes off, or speak in a threatening way.

People may behave in these sort of ways because they are angry or frightened, or perhaps because they are responding to voices they can hear. If you get angry or upset as well, this can make things worse. In this sort of situation, try to stay calm. Remember that your relative is not always like this, and that they are not able to control how they are behaving at that moment. Such embarrassing behaviour usually does have an explanation, and is usually related to internal experiences such as voices or unusual perceptions or thinking: it is the illness that is making him or her behave in this way.

It may be helpful to leave your relative alone for a while until things are calmer. Some people find it useful to wait until an outburst of this kind is over, and then talk about what has happened later on.

It may be helpful to talk about an embarrassing event afterwards with the whole family, including the person who is unwell. You could try to work out ways of avoiding similar situations in the future and ask your relative if there is anything you can do next time to help or interrupt such behaviour at an early stage.

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Sex and promiscuity

Sometimes people who are ill behave in a promiscuous way and this may be particularly worrying if you are a parent, particularly if your adult child is choosing sexual partners who in the past he or she would have considered unsuitable.  Even though you may feel uncomfortable about his or her behaviour, you have to accept that you cannot enforce rules about sex. It is helpful to support someone through these relationships, particularly with regard to safe sex and contraception. Your relative needs to know you still care about them, even though they are behaving in a way that you may not approve of.

Promiscuous behaviour may be an early sign of relapse for people who have a diagnosis of bipolar disorder and you might want to discuss with them if they would like to add it to a relapse prevention plan that they could work out with their mental health team (see Relapse page).

Sometimes people who are unwell lose their sexual desire. Some types of antipsychotic medication also impact on people’s sexual interest. This may be particularly difficult for partners to understand and deal with, especially if the person who is ill has also stopped expressing affection.

Conversely, the manic symptoms of bipolar disorder, when the person can be full of plans and ideas, remain awake for several days and be sexually demanding, can also put a lot of strain on relationships.

Nearly all people who are in a relationship with someone who has psychosis feel like ending that relationship at some time. This is a normal reaction. However, the guilt that follows can also feel unbearable. Some couples find that the experience of mental ill health draws them closer together. Other relationships do not survive the demands made by a severe mental illness.

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Alcohol, drugs and medication

Some medication prescribed for psychosis interacts with alcohol and increases its potency. As a result, someone who drinks alcohol while on medication may feel its effects more quickly. Even small amounts of alcohol when combined with medication may make an individual become sleepy, morose, or less in control of strong emotions within a very short time. It may be a good idea to talk about how the results of even moderate drinking can be unpleasant both with the person who is ill and the whole family. If alcohol becomes a serious problem, talk to your GP or the mental health team involved in your relative’s care.

Research shows that people with psychosis who consume a lot of alcohol or who are heavy users of street drugs have more frequent emergencies and more problems.

Heavy consumption of drugs almost certainly increases the risk of developing psychosis (see Cannabis page). If someone already has psychosis, heavy use of street drugs or alcohol may prompt another episode, or make their symptoms worse.

People who are dependent on alcohol and drugs may need to seek help separately in addition to the support they are offered for psychosis. Your GP or the mental health team involved in the care of your relative will be able to advise and tell you about specialist help that is available.

Cigarette smoking is extremely bad for health whether you have psychosis or not. Your relative should be given advice about this from your GP and encouraged, along with anyone else in the family, to go to smoking cessation clinics, or to discuss wearing nicotine patches with your local pharmacist.

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Violent behaviour

Contrary to common belief, most people with psychosis are not violent.

However, when someone with psychosis does behave in a violent way, it may be directed at a family member, sometimes the person most involved in supporting them.

People may act in a violent way because they are angry, or frightened, or because they think someone is being unreasonable. Sometimes violence is triggered by alcohol, by street drugs, or by lack of sleep. Some people hear voices that tell them to behave violently and feel they have to obey them.

If your relative does behave in a violent way, it is important to talk about it afterwards, when they have calmed down, and to try to find out what prompted this behaviour. Understanding what triggered the behaviour means future acts of violence may be avoided. If a particular topic of discussion made them angry, for example, you can avoid talking about it in future. You should tell your relative you were upset and hurt, and that their behaviour was unacceptable.

If you think your relative may become violent, try to defuse the situation. You could leave them alone. Or you may be able to calm them down, or give them a chance to talk about their anger rather than act on it. Or you may be able to distract them – offer them a walk outside, a cup of coffee or tea, or something to eat, for example, or start talking about something they may be interested in. Be very calm and talk in a quiet voice. Try not to confront or ‘crowd’ them. Don’t get too physically close to them, and move to another part of the room. Try not to show that you are angry or upset.

Even though you may try to prevent violence and become skilful at doing so, there are times when you can’t stop it. If your relative does become violent towards you, you will need to call the police. The police should be able to come at any time of day or not, and are likely to help calm things down.

If your relative behaves in a violent way towards you on a regular basis, and you get to the stage when you are constantly calling the police, it may be that you have to stop living together. You may have to change your locks, or even get a court injunction.

If your relative is violent towards you at any time, you must let the mental health team involved in his or her care know about it, and also tell your GP.

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Suicide threats

Research has shown that people with a diagnosis of schizophrenia and bipolar disorder are more likely to take their own lives or attempt suicide than other people. People who have bipolar disorder are more likely to kill themselves when they are depressed.

Sometimes people who are unwell believe they are a burden to members of their family, that they have nothing to live for and that their future is bleak.

All threats of suicide should be taken seriously. Sometimes people talk about taking their own lives because they are feeling very distressed. At other times, they seriously mean to kill themselves. Threats of suicide are very upsetting and difficult to deal with, and it may be impossible to work out whether your relative is serious in their intent.

It is not possible to prevent all suicide attempts. If someone is determined to take their own life, they will often be successful even if they are under close surveillance at hospital or at home.

If your relative threatens suicide, or seem to be more than normally tearful or upset, talk to your GP or the mental health team. If they are threatening to do so imminently or violently, by jumping out of a window, for example, or harming themselves, and you are not able to calm them down, call the police or an ambulance. Mental health professionals might suggest intensive home treatment or time in hospital to help reduce the risk of suicide until your relative begins to feel more optimistic.

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Money problems

Money may become a problem when you are supporting someone who has psychosis. When people are unwell, they may not feel able to work, and then may find it hard to get a job when they begin to feel better. There is still enormous stigma and fear about mental health problems. Many employers are still reluctant to employ someone who has a diagnosis of severe mental illness (see Discrimination and stigma and Employment pages).

You may decide to work fewer hours to help care for your relative, particularly when they are very unwell, but this should be a temporary measure, as it is important to retain your own life and work interests if you can.

People with psychosis may also become unrealistic about money, and find it hard to budget day to day. People with a diagnosis of bipolar disorder may spend large amounts of money while they are having a manic episode, running up huge debt and taking risky decisions that may impact on the family finances. Again, it may be helpful to try to talk about some preventative measures (removing credit cards, for example) with the person when they are not in a manic phase.

It’s important to claim all the benefits and financial support you are entitled to, including those for carers. Talk to the Citizens Advice Bureau, or to Rethink, or to Mind. Or visit websites that explain about benefits (see Other useful websites page).