Ask the psychologists...

If we can get a referral for my son to a psychologist to do CBT for psychosis, can he stop taking medication? What’s the best way to get that sort of referral?

At the moment, it is not recommended that psychological treatment such as CBT for psychosis is offered without antipsychotic medication. This is because all the trials where CBT for psychosis was shown to be useful have so far done so in combination with medication. Antipsychotic medication is difficult to take in the long term, but currently the outcome is better when people stay on it. What may be helpful is for your son to discuss again with his mental health team which medication suits him best. Similarly, if you have any concerns or questions about medications and how they work, you could also speak to his team.

The best way to get a referral for CBT for psychosis is usually via your son’s mental health team, or via his GP. I am afraid sometimes there is a waiting list, but your son asking for a referral would be the place to start. 

What is ‘psychodynamic therapy’ and could it help my son who has schizophrenia?

Psychodynamic therapy is a psychological approach to problems that is based on key concepts about the internal causes of mental health problems, relationships and personality. It was developed in Europe at the beginning of the 20^th century from the work of therapists such as Sigmund Freud, and became very popular in the USA and in parts of the UK. It is usually offered by therapists in private practice, and therapy can be intensive, with some people attending appointments several times a week over several years. 

At the moment, there is no evidence that such therapy is helpful for schizophrenia. The intensity of the therapy and the ambiguity inherent in the therapeutic approach seem to be problematic for these kinds of problems. At the moment, the talking psychotherapies that are recommended for psychosis are cognitive behaviour therapy and family intervention.

Is there anything I can do to help my daughter stop having paranoid thoughts? She believes the whole family is against her and this causes a lot of conflict.

Probably not, but you could try to start a process of seeing things from her point of view, and try to reassure her that what she sees as ‘the whole family against her’ is her family trying to be helpful.

The trouble is, there will be a germ of truth in her, presumably paranoid and highly convinced, ideas – you will probably be trying to get her to see a GP or her mental health team, to take her medication, to look after herself. She however, will be feeling that you are not acting in her best interests, because she thinks she does not need any of these interventions. I am guessing, but she probably wants you all to ‘leave her alone’ to get on with her own life and not to be ‘interfering’. This is perhaps where the conflicts come from.

The above details may not be quite accurate, but this is your starting point. What would she find helpful? If she says to leave her alone, your reply is something on the lines of: ‘but when we do this, x and y happen.’ Try and be factual at this point and discuss recent events – she gets upset, she demands your help, she causes problems in the family – whatever it is. You are not trying to blame her, but to point out that there are difficult events that result from her thinking and her behaviour. Try not to be confrontational, but to be sympathetic to the fact that she is finding things difficult, and that perhaps you and other family members can be more helpful. For instance, are there times when she does manage, but something triggers her paranoia? Can this be avoided at all? Are there particular settings or people that tend to make things worse? It is possible that you may have even noticed some of these factors yourself, and could either gently share these with your daughter, or work with her to reduce the factors in her lifestyle and environment that tend to make things worse? I am not sure from your letter whether your daughter is consuming alcohol or drugs to cope with her experiences, but if that is the case, she may need some additional support with this.

Paranoid thoughts can easily be triggered by feelings of anxiety, threat or panic. Is there something you and the family can do or say at these times, that would calm her down and help her think in a less distorted way? It is very hard to tell from the details you have provided, but I wonder whether some medication might be helpful at these times as well.

If there is nothing you can agree on that would make anything better, and she is at risk of harming herself and others, do document this and discuss it with your GP and/or her local mental health team, if she has one. If it is an emergency and you feel that your safety is at risk, please call the police and get some outside help.

Your daughter may not be correct that she is managing well, and you may well have to act in ways she does not agree with at times. Unfortunately, you can only really do this when problems are acute and life threatening. At other times, you will have to see if you and she can agree some ‘ground rules’ about day-to-day problems that will be more effective for you all. Finally, you may find it helpful to visit your local library or bookstore to find some helpful resources on coping with paranoia. 

I have been living with my mother’s schizophrenia for about 13 years now. I am 19 years old now and am facing being kicked out of my own house and being disowned for reasons beyond me due to her condition. I don't know who to turn to get confidential help for me just to talk to someone (because its making me feel like I'm going crazy) and for her because I am just worried for her well-being. She has been on medication before but somehow convinced her doctor that she didn't need it any more. Her behaviour can be confusing, unpredictable and erratic and it’s mostly towards me, not to anyone else. I really need someone to point me in the right direction before I become ill myself. 

I am very sorry to hear how difficult it has been for you to support your mother all the time you have been growing up.

I appreciate you still want to help her, but your first priority now has to be to look after yourself. It sounds as if your mother is currently rejecting both you and your help, and that there is little you can do to change her mind just at the moment.

If you are going to be homeless, you must go to your local Homeless Persons Unit (HPU) – it will be connected to your local social services offices. At 19 you are technically an adult, so you need to tell the HPU your circumstances and that you are in urgent need of housing for yourself. If you have any written evidence of this, or anyone else who will back up your claim, it would be helpful to take this with you, but make sure you go anyway and talk to them about it.

It might be helpful if you informed your mother's GP that you are worried about her, or her local mental health team, if she is still in contact with them, and ask one of them to write you a letter confirming that your mother is serious and has also said this to them. Your local social services department might also be able to give you advice. They will have a duty social worker available to deal with acute problems such as yours, so ask to speak to them. You will also be able to explain you are worried about your mother, and they should be able to contact relevant services for her, such as her local team or her GP. I am not sure from the details you sent whether you have any younger siblings living at home or visiting your mother. If this is the case, it would also be important to let her GP and/or her local team know. This information will help them to plan the type of care that you mother needs right now.

The second place to visit is your own GP. Explain that you are very worried and upset and why. If possible, write down what has been happening at home recently, with dates and times, and with an account of what your mother has said to you. The GP should have access to some psychological help for yourself where you will at least be able to talk through how upset you are. This will be confidential. Although you are feeling very alone, and with no one to turn to, having to grow up being a young carer as you have done is being more recognised as stressful and not so uncommon. Your GP might also know of local young carers’ groups where you could find someone else to talk to about how difficult things have been, and what a lot of responsibility you have had to take on.

Thirdly, could you stay with anyone else, at least temporarily? Do you have anyone else in the family you could turn to, such as grandparents, or other family members? Do you have any friends who would let you stay with them while you sort out your own accommodation?

If you find things are getting desperate, your local police station will be able to give you advice, and the Samaritans will always answer the phone, even late at night if you need someone to talk to – telephone 08457 909 090.

Hopefully you will get through this crisis. You are not going crazy yourself, but what you are going through would be stressful for anyone. Once things have settled somewhat, you and your mother might want to begin to sort out your relationship, so that you are not the only person providing her care. If she continues to refuse this, it may be that you have already done all that you can for her, and should focus for now on rebuilding your own life.

Caring for a relative with mental health problems can be very difficult, but it can be particularly difficult if you are a young adult caring for a parent, as most of our services are not tailored to the specific needs of young adults. Finally, I think it is worth mentioning that I feel that you have done really well in finding the time to contact the website: I recognise that it is not an easy thing to. I hope that once the situation has settled down, you will have time to concentrate on your life goals and plans, which I am sure your mother would be keen for you to do.

One of my friend's sons has just been sent to hospital after having a psychotic episode. He smashed her house up and his behaviour was very frightening for her, and for the neighbours. Since he was taken away by the police, she doesn't want to see anyone. She rarely answers calls and isn't returning phone messages. I just want to help her but don't know what to do.

Shame and stigma are still a large part of individual and societal reactions to severe mental health problems. Your friend has had to witness a very frightening and public event, where she might well have been fearful for the safety of herself and of her son, as well as for immediate neighbours. We now know that such events can be traumatic for carers, as well as for service users, and that they can cause severe reactions such as post traumatic symptoms – eg flash backs and severe anxiety, feelings of numbness and depression. When this is compounded perhaps by acute feelings of shame – that your family has caused these difficulties in the local community – it may not be surprising that your friend is not answering the door or the phone. It is likely that she just feels very sad and not up to seeing her friends at the moment. 

Your friend might be trying to make sense of what has happened and does not feel quite ready to talk to anyone or to allow those close to her to see her in a vulnerable state. I don’t know if you have children of a similar age and whether you previously used to talk with your friend about your children, but sometimes it can be hard for a parent of a young adult with mental health problems to be with other people who have children of similar ages, but without mental health problems. As a carer you may worry about the conversation topics being about the children and how they are getting on – this can be difficult if your child has recently experience an episode or has difficulties with their recovery. It is not uncommon, therefore, or carers to withdraw and avoid situations where they may come into contact with people they know.

Does your friend have any other family support? Are you in a position to find out if she does, and whether they can be asked to go round and see how she is? Sometimes families try to hide these kinds of events, and it may be helpful to at least alert the rest of any family to the fact that there has been a problem and that you are concerned.

The other thing to try, of course, is to post a note through the door, just saying you are worried about her, and would like to be able to help. You could ask if you could do anything practical perhaps, such as helping her to mend or replace things that were smashed. Does she need help with shopping? You could say that you understand that her son has had problems, but that you are worried about her, as well as asking how he is. Do you know if other friends feel the same? If several of you are able to offer this kind of help, it might reassure her that she is not alone and that others do not think the worse of her.

My son has lived with me for six years since he had a first psychotic episode. He is very hard to live with, doesn’t take his medication regularly, doesn’t do anything, is rude or completely silent and sometimes threatening. I find it very difficult and sometimes feel resentful that my life has turned out like this. I am by myself and can’t see myself meeting anyone who would accept my situation. The thought of living like this for years and years more really depresses me but I feel I am a bad person for not being able to cope with my son’s illness.

The first thing to say is that you are not a bad person. The situation you describe is challenging. Finding it difficult to cope with your son’s ongoing problems would be hard work for anyone. You say you are on your own, and it is not surprising that you are finding it hard going, and regretting that your own life and future might be compromised. Being in any long-term caring role can itself be depressing, particularly if you are not being supported by anyone or by any service. It is also not unusual to feel that your own life is taking second place to someone else’s needs, and to feel rather sad about this.

It would be helpful if you can find some way to get some support for yourself, and also to see if your son’s problems can be mitigated at all.

We have argued for many years that carers have needs of their own, and that services should not just worry about the service user. Despite the cuts in services, you do have a right to a carer’s assessment and can ask your GP to refer you to your local social services for this. It may be you are entitled to a carer’s allowance, or to more specific help such as respite care, where you might at least have some days off.

Contacting other carers might be helpful for you. Rethink, the mental health charity, runs local carers’ groups and has a helpline, where you might find others in your situation who can make suggestions about how to cope (telephone 0845 456 0455  Mon-Friday 10am-1pm). 

Giving yourself permission to take your own life back can also be helpful. Carers often feel that they do not have a choice, but have to take on a caring role. This can lead to isolation, and a loss of your own support, and a narrowing of your perspectives. This is not helpful for you or for your son. Guilt is not a helpful emotion at this stage, as it does not tend to lead to solutions. It is not your fault that your son is having to deal with these problems.

Some of the difficulties that you describe are common in individuals who have experienced an episode of psychosis. I am not sure about the type of mental health support you have available, but your son needs a new assessment from his GP who can refer him to a local mental health team, given his current difficulties. Perhaps your son needs new accommodation for instance. He might value a more independent life style, and a chance to begin to look after himself, with appropriate help. You could still visit him, and keep good contact with him, but it does not have to be you who tries to meet all of his needs. It may be that you trying to do this has, inadvertently, made it more difficult for both of you, and that your best way of caring for him in the future is to help him to manage more for himself. You could start by asking your son if he would mind you exploring some sources of support for you as well as for him. If he does not want a conversation, just tell him gently that this is what you will be doing, and see how it goes. If he is threatening, get some outside help: call the police if it is life threatening.

You also say you might wish to meet someone else. Perhaps you will. You should not close down your own options at this stage.