Mental health issues
Taking care of your relative or friend
Taking care of yourself
Loss
Helping to support a relative or friend through a short period of unhappiness or illness is one thing. Settling in for the long haul is an enormous commitment of time and emotional resources.
To avoid becoming physically and mentally exhausted, you need to find out about the person's condition and the most effective help you can give. You must also take care of yourself, making sure that you get some leisure time and social life.
Coping with severe mental illness is perhaps the hardest task, since you may face abuse and hostility from someone whose personality has radically changed from that of the person you've loved. Even when you know that the hostility is just a manifestation of an illness, it can be difficult not to take unkind remarks personally. And when a psychotic episode is over, it can be equally difficult to re-establish trust and respect.
In addition, mental illness still carries a stigma. If you are sharing a home with the sufferer, it may be that much harder to persuade your own friends to visit. There is nothing remotely uncomfortable about dropping in for coffee if there is someone present in a wheelchair, but friends may be reluctant to face embarrassing or frightening behaviour. Consequently, you need to make even more effort to carve out space for your own life or you will risk isolation.
• Talk to them about what they find most helpful during a difficult patch. Being open about the problems and discussing what you have learnt about the illness can be supportive, provided you do not push the issue when it is unwanted.
• Establish a consistent structure to daily life, and try to include social activities. But don't put pressure on your relative or friend to be sociable if they don't feel up to it.
• Periods of withdrawal and sleeping at odd hours are not uncommon. Don't nag at your relative or friend to be up and dressed along with everyone else, and don't fuss too much. Offer cups of tea or coffee periodically, let them know you are available if needed, and when they feel ready to rejoin you, make it an undemanding experience.
• Difficult though it is, accept that your relative or friend may seem entirely uncaring about your own welfare. Expressing your anger and frustration to them will only cause stress and may cause a relapse, so if things are getting on top of you, remove yourself until you have let off steam elsewhere.
• Try to develop a collaborative relationship with the professionals dealing with your relative or friend's illness. This is a particularly difficult arena where mental illness is concerned, as the professionals must respect patient confidentiality and you may feel that they are leaving you ill-informed. If your relative or friend is an adult, they will be treated as such and you will probably not receive a warning phone call if, for example, they have left hospital against medical advice.
• Try to get as much expert advice on supporting the mentally ill person as you can. Following your natural impulses in an attempt to comfort someone in distress may lead to misunderstandings and may even be interpreted by them as a threat.
• Your relative or friend may be reluctant to take medication because of its side-effects. Discuss this together with their doctor to see if the medication can be changed for another, or if there is a way of alleviating the side-effects.
• People with schizophrenia are no more likely to be aggressive or violent than anyone else. But if a violent or aggressive episode does occur, try to keep calm to avoid ratcheting up the emotional tension. Tell your relative or friend firmly to stop their behaviour, and if this has no effect, leave the house until things are calmer. Tell your medical team about any threats of violence to yourself or others. After the episode, try to find out what may have triggered it so that you can try to avoid it happening again. Make it clear to your relative or friend that violence is not acceptable.
• Remember that you are not alone. In the UK, there are about 1.5 million carers sharing the experience of looking after someone with severe mental illness. Don't base your life entirely round mental health issues, but do draw comfort from talking to other people who understand exactly how you feel. Check out some of the organisations that deal with mental illness and with carers. You will probably be able to find local fundraising activities you can participate in or support groups you can join.
• Accept help from family and friends rather than trying to shoulder all the responsibilities yourself. But don't expect them to anticipate what will be most useful. Rather, suggest things that they can do to help you both practically and emotionally, such as giving you a lift to hospital or accompanying you on an evening out.
• Do not feel that your support must be unlimited and unconditional. Offering the most effective support means setting time aside for yourself to enjoy a social life and pursue your own interests. Burning yourself out with exhaustion and stress is not helpful to your ill relative or friend, so don't feel selfish in setting boundaries as to how much time and energy you can give. You have limitations: accept them.
• If you are the parent of someone suffering from schizophrenia, do not torture yourself with questions about how you might have contributed to your child's illness. The causes of schizophrenia are still being debated, but most of the evidence indicates that it is the result of a combination of things, of which a genetic factor is only one – and that may not be hereditary.
• Don't exhaust yourself trying to dispel with logic the delusions or hallucinations of your friend or relative. These symptoms may recur repeatedly, and nothing you can say will stop them believing them. Don't collude for the sake of peace. Acknowledge that the beliefs or voices are real to them, but say they are best expressed only in front of you or the medical team.
• Do not feel guilty if you have to call the police and set in motion a compulsory stay in hospital under the Mental Health Act ('sectioning'). You are acting in the best interests of your relative or friend, who may be at risk of self-harm or, less likely, of harming others. While it is very distressing to see them compulsorily detained, remember that they should be safe (after all, psychiatric hospitals were once called 'asylums'). If you are paying hospital visits on your own, try to arrange to meet a friend for some company afterwards.
• When someone you love is given a diagnosis of schizophrenia, it can be very distressing for both of you. You may feel bereaved, as if you have lost the person you care about. Don't hesitate to see your GP for advice and support for yourself if you are suffering from depression.
People feel loss and bereavement not only when someone dies. They can also mourn the loss of a close relationship, the disappearance of good physical health and the taking away of freedom. A person who has lost years of enjoyable life to illness may experience anger and grief similar to someone who has been unjustly imprisoned.
If you have a friend or relative in this position, try offering a combination of sympathetic understanding and practical help. This will provide them with support and alleviate their feelings of vulnerability and loneliness.
• People who are grieving are usually intensely emotionally stressed. Don't take it personally if they ignore your problems. They may not be able to cope with any more drain on their emotions.
• Grief is exhausting. Offer practical support such as doing the shopping, tidying the house or mowing the lawn. Your friend or relative might not care about their surroundings at the moment, but as they begin to pull round, they will start to – and they will feel much better if their home is in good shape.
• A bunch of flowers, a CD or a voucher for a massage might seem nonsensical recompense for the loss of a partner or the diagnosis of a chronic illness. Nevertheless, with a 'drip' effect, receiving small things like this builds up a feeling of being cared for and supported – reassurance that someone is watching and ready to help.
• Shock and grief are numbing and confusing. For a while, you may have to take over from your friend or relative and suggest the best courses of action. If they would clearly benefit from medical help, they may be grateful for someone else taking the initiative to make an appointment for them to see a doctor – though clearly you shouldn't persist if this is something they are strongly resisting. Offer to accompany them to the appointment.
• If some form of 'talking therapy' is acceptable to your relative or friend, do the practical work of finding out what is available locally. The NHS can be limited in this respect, but the GP may have suggestions for other sources of help. Discuss the options, and again offer to go along for the first few sessions. It's not likely that your relative or friend will want you to stay in the room with the therapist for long, or at all. But they will feel more able to explore painful emotions from the outset in the knowledge that there is a trusted person to pick up the pieces and organise the journey home.
• The process of mourning encompasses denial and isolation. Don't feel hurt and rejected if your relative or friend keeps away from you, but welcome them when they do finally reach out. It is equally important to make them know that you want to be with them. It can be extremely upsetting to see people crossing to the other side of the road just because they don't know what to say to you. You may run the risk of rejection, but it is very important to keep in touch with someone who has suffered a big loss.
• Anger is another phase of mourning, and you may find that, on occasion, you are the butt of it. It really isn't directed at you but at the situation, so try not to take it personally. This can be hard, especially when you have been expending a good deal of emotional and physical energy on being a rock of support. Hold on to the knowledge that this is just a symptom that will pass as the grieving process moves on.