Please could you give me an idea on how to communicate with my son, age 24? He has been on cipralex, risperidone, sertraline, and olanzapine for over four years, and has also been off meds for several months with two acute psychotic episodes as a result. He is now in a third and has been sectioned, but agreed to take olanzapine to avoid hospital. He is up in his room a lot, will come down and say, ‘I'm having very troubling thoughts.’ I will reply that I'm happy to listen etc but he replies, ‘I can't talk about my troubling thoughts.’ We are desperate for help. We have been given no practical help on how to cope with the communication problem.

 

I am sorry that the situation for your son is still so difficult. We know that communication difficulties in people with psychosis are very common and that it can also be very difficult and challenging for their relatives to find the ‘right’ way to communicate with them. Troubling thoughts might encompass quite a few things, including negative, threatening or commanding voices. Therefore, your son might be trying to protect you by not wanting to discuss them with you, or he might be told that he is not allowed to talk to you.

It is clear that your son feels comfortable enough to let you know that he is having troubling thoughts, which is a very helpful step in the process of trying to find the right way to help him. What you can do is sympathise with how unpleasant such thoughts must be, and then try to discuss what can help to reduce them, if anything. Obviously he does not want you to listen to him, so I would not say that, but instead try the tack of – ‘What would be helpful? Does it help to stay in your room, go out for a walk, talk to someone else?’

 

It might well be that interrupting such thoughts by some activity is worth a try, particularly if he is in fact worrying (ruminating) about his problems. We know that many people with similar difficulties to your son report that they can sometimes feel better (eg feel less preoccupied with their thoughts) when they are engaged in an activity. It would also perhaps help for him to talk to one of the mental health professionals. You could ask if he could have cognitive behaviour therapy for psychosis from a clinical psychologist or other mental health professional. The evidence is that this kind of input, talking about worries, with medication, can be helpful. Your role might be more to ensure he is safe and keeping as busy as he can, while he begins to deal with these problems.

 

How do I explain to a four-year-old that his 18-year-old sister has psychosis? Are there any books that would help me to explain this to him?

 

I am, sadly, not aware of any literature on this for four-year-olds. For young children aged eight to 10, I have used the idea of a ‘waking dream’. You might be able to adapt this: his sister at times has experiences, like a dream at night, but often very scary, and which do not go away when she wakes up.  You should emphasise that he should not be scared and it is not his fault, and try to explain that this is why sometimes his sister does not want to talk to him, or is too busy to play like she used to. It appears to be particularly important to explain why, to provide an explanation the child can relate to and feel good about. His sister could also perhaps be encouraged to talk to him herself about what is happening to her.

 

My son sometimes becomes angry and can be aggressive and threatening. Can you give me some advice on how to deal with him when he becomes violent, or looks like he will?

 

This is one of the most difficult problems, and potentially dangerous for you too.

 

When he is calm, it is helpful to talk to him about the fact that sometimes he can make you feel scared, when he gets angry or threatening, and that you are worried about this. Try to ask/find out what the trigger is – what is it, that makes him angry? Is it about money? Is it related to particular thoughts or feelings that he has? How things are said? Is it the time of day? Is there anything you can do differently?

 

If he is asking for money for example, explain you do not want to give him any because ... etc., and try to come up together with another workable solution. Then stick to it.  It is not helpful to be inconsistent.

 

It can be helpful to establish some basic guidelines about his behaviour and your response to his behaviour. For example, you could say that when he gets angry/aggressive you will have to call for help. It is important that you have a low threshold for this. Do not get trapped in a room with him, try to leave him some space. Leave the room, go outside. Have a plan about who else you can ask to help. If you are really worried or he does not calm down, do not be afraid to call the police. Many carers tell us they can be very helpful in these instances, particularly late at night.

 

Finally, if your son is seen by his local mental health service, it might also be helpful to request the team’s input and to let them know how things are for you both at home. The difficulties you describe are, unfortunately, common in many families and staff in the team will be aware of this. Your son might welcome the opportunity to discuss what makes him feel angry, but with a mental health professional. His local team might also be able to provide you with additional support. Although we understand that it can be difficult and carers can sometimes feel embarrassed, it is important to avoid concealing problems that you may have with a relative being aggressive and/or violent. The health and well-being of people who are unwell and their carers are equally important.

 

Do you have any advice for incorporating my daughter into family occasions such as birthday celebrations? Everyone is embarrassed by her behaviour and it is always very awkward.

 

There are two issues here. The first one is how to include your daughter in family and other social activities. The answer here is yes, it is good to try to include people in these kinds of activities ­ the alternative is more isolation and reduced numbers of friends.

 

However your daughter may prefer to be more socially passive than active – she may find it easier not to join in with lots of talking and joking and not to start conversations, as this may be stressful for her. If this is the case, then this is what needs to be ‘allowed’ without awkwardness – being part of a social occasion without being at the centre of it. 

 

So, it may help to explain separately to your family and friends that your daughter prefers to be quiet on these occasions and that they should not worry about it. Also, ask your daughter what she would like you to say, and how she would like people to behave towards her. Many people find that being accepted at such gatherings, being smiled at but not stared at, being greeted but not asked questions, is ok, and keeps them involved with family and friends without having to pretend or to perform. Do also remember that it is important to avoid putting too much pressure on yourself and family members (including your daughter) to create the perfect 'stress-free' family gathering. As we all know, family gatherings can be stressful at the best of times, and your daughter is likely to be sensitive to any pressure or tension. Are there any particular triggers for your daughter finding things difficult, and are there particular things that would help to manage these? For instance, is she ok for the first hour, but not later on, so does she need to find somewhere quieter for later parts of the evening?

 

Finally, it might be worth thinking about having someone ‘assigned’ to your daughter during an event, who can be close enough to offer support if required, but flexible enough to give your daughter space to participate and enjoy the gathering, if it is all going well.

 

What other therapies are available for someone with a diagnosis of paranoid schizophrenia? My daughter would like to try something different to medication but doesn’t know what to ask for.

 

Unfortunately for your daughter, antipsychotic medication is the first line treatment for severe paranoid schizophrenia, as it calms you down and helps prevent relapses when someone has recovered. The evidence is that this is helpful, and therefore the question is not so much what else can be tried, as what can I add to medication? 

 

Ask your daughter to discuss again with her GP or psychiatrist which medication might suit her best. However, the important point is, being on medication does not preclude other therapies.

 

Cognitive behaviour therapy for instance, helps people look again at the evidence for their strong beliefs, particularly the evidence that disconfirms their ideas. This kind of evidence is often overlooked. Cognitive behaviour therapy can help people try out behaviour that tests out how threatened they may feel, and to find out for themselves whether there is a current basis for their worries.

 

Family therapy is another alternative. Family therapy (sometimes called family intervention) can help the whole family find ways to negotiate and solve current problems, while dealing with the worry and loss that all the family might be feeling. The current evidence is that both cognitive behaviour therapy and family therapy, together with medication, can be helpful and improve reduce fears and worries; family therapy can keep a person well for longer. Either can be helpful for someone with paranoia. The problem locally may be that they are hard to find, but it is still worth your daughter asking for a referral for one or other of these extra therapies from her local mental health team or her GP. Both therapies are available on the NHS.

 

How can I persuade someone who doesn’t think he is ill to take medication?

 

You probably can’t. This really is the job of the prescribing clinician and/or mental health team to know about, discuss with your relative, and decide a solution with them. The solution, of course, might include your relative deciding not to have medication. This decision can leave families feeling very frustrated and confused about how to make things better for their relative.

 

What you can do is to be sympathetic to your relative about how difficult it must be to be expected to take medication when they do not think they are ill. It is also helpful to find out exactly what the problem is ­ our guess would be that there are other reasons as well – for instance that the medication does not feel helpful, the side effects are not acceptable, the person feels stigmatised, or feels better and thus does not see any need for medication.  Your relative is also not alone – many people with these problems feel similarly that they do not have an illness and so medication is not appropriate. 

 

What you can also do is to discuss that when your relative is on medication, you have observed (if you do) perhaps that they are less distressed, they sleep better, they concentrate more, can get on with life more easily. In contrast, off medication after a few months (medication effects wear off gradually), you observe that they become more distressed, agitated, or whatever. Doing this means you are adding new information that your relative may not know about, about how he of she comes across both with and without medication. This might help them to make their decision about what is best for them.

 

Finally, you could ask if there is anything that you can do to help, as you can imagine how hard it must be to have to take long-term medication – would it help or hinder if you prompted them to take tablets or go for an injection?; would it help or hinder if they talked to you about it if they were upset?

 

However, once you have had this discussion, you should try not to keep having it. Try to steer this issue back to the mental health team and their expertise – it is important to avoid your relationship becoming dominated by conversations about taking medication.