There has recently been a lot of information written specifically for carers of people living with schizophrenia. The term ’carer’ can include parents, siblings, children, friends and partners, anyone who is involved with the person who is experiencing schizophrenia and who may play a role in their recovery. It is important to remember that not all people with schizophrenia need regular care from a family member. Most will lead full and independent lives using everyday social supports. Families who cope best are those who come to accept the illness and its sometimes difficult consequences, develop realistic expectations for their relative and for themselves, accept all the help and support they can get, and manage to keep a philosophical perspective. It takes time to develop these attitudes, but the understanding support of others can be a great help. Below, we outline some principles that many relatives have found useful, in the hope that in time, if appropriate, you can lean to adopt them within your own life.

Realise that schizophrenia is not rare

A diagnosis of schizophrenia can be a very isolating experience for family members who often do not realise the extent of this condition. Schizophrenia may seem to be rare but that is because it’s not talked about. It is much more common than you might think, affecting approximately 1-3% of people worldwide. That’s many thousands upon thousands of Irish people who find themselves in a similar position to you.

Learn as much as possible about schizophrenia

This handbook is a good place to start. Knowing the causes, symptoms, treatment and outcomes of schizophrenia will go a long way in assisting you to cope with the illness in your family. Understand and accept that symptoms may come and go, may vary in severity, and that different degrees of support may be needed at different times. There are many ways to enhance your knowledge but whichever option you choose, make sure you keep yourself updated regularly. Research is continual and newer medications and treatment options which your relative might find helpful are always being developed. Perhaps you might also like to attend a family support course or you might like to read a useful book at your own pace.

Get to know the origins of the pressures to which relatives are subject

Relatives are often thrown in the deep end, having to care for their family member or friend with little or no experience of dealing with mental illness. This is a direct result of lack of community care, a problem faced in Ireland since the process known as deinstitutionalisation (when medication made it possible to move people with schizophrenia from hospitals into community based care). The theory was that when people returned into the community, a network of support services would await them. Unfortunately, this never happened, (at least not to the extent that is necessary) and as a consequence some relatives have become the primary care givers. The impact of caring placed on some family and friends has very real and serious consequences for those involved. Relatives are more prone to stress related illnesses and financial hardship and are subject to sometimes overwhelming feelings of distress, anger, guilt, depression and frustration. While this may sound discouraging, it is important to remember that by acknowledging these burdens that are placed on you and by following some of the advice in this handbook, you will begin the journey to acceptance and peace.

Avoid the trap of self-blame and destructive self-criticism

Distress about the illness may cause natural emotional reactions of guilt, anger or shame in family members; yet acknowledging these eactions is the first step towards resolving them. It is crucial to realise that neither the person with schizophrenia nor you are to blame for it.

Seek professional helpers who are effective

Identify them by their compassionate natures, informative style, eagerness to have you as their ally and ability to ensure you receive comprehensive education in understanding and coping with schizophrenia. Working in partnership with professionals who are understanding and helpful will increase your ability to successfully deal with schizophrenia through knowledge gained and support received.

Contact an appropriate self-help group

Attending a local support group for relatives can be a good step toward coping with schizophrenia. The simple act of sharing experiences can help to reduce your sense of isolation, increase your coping power and increase your social network. Your new friends may well become your greatest allies. Shine has a network of support groups throughout the country.

Accept that training rather than natural instinct is the guide to caring

Schizophrenia is a very complex illness and as such, you should seek professional training in how to most effectively deal with schizophrenia, especially in the early stages (perhaps when your relative is newly-diagnosed), when it is very helpful to attend a family education programme. These programmes will not only increase your knowledge of schizophrenia, they will also help you to identify the most effective coping methods for you and your family. If there are no courses running in your area, phone Shine who can refer you to trained specialists practising near you.

Set your sights on maximum independence

This may at first seem a strange thing to suggest but both you and your relative need to gain some levels of independence from each other. Instinct prompts people to protect relatives at all times but this can actually do more harm than good. Everyone, regardless of whether or not they have schizophrenia, needs to grow and find their own way in the world. Sometimes, you may need to recognise when to stand back and give each other some space.

Don’t be surprised to discover that the ability to change is the hallmark of the coping relative

It is the ability to adapt and to look at things differently that distinguishes relatives who will cope from those who will not. Change is an essential part of life for everyone, but relatives and friends of people with schizophrenia are especially prone to sudden and disrupting life changes. Be aware that your emotions too will change over time. A recent study found that relatives’ emotions changed drastically over time, from confusion (pre-diagnosis), to relief (upon diagnosis), hope (for the relative getting better), grief (at the realisation that the illness was longterm), anger and finally acceptance. Recognising these emotions is as important to caring as working out the practical side. Those with experience advise that once you get to the final stage of acceptance, once you let go and say ’this is it’, life becomes simpler.

Take heed that unconditional self sacrifice is harmful to caring

Unlimited, unconditional self sacrifice is harmful to everyone: you, your family and the person with schizophrenia. If you start to recognise that you are no longer taking holidays, never going out without leaving a family member behind to care for your relative, always seem to be bailing them out of trouble or you find that you are putting up with unacceptable behaviour, then it’s time to step back and look at the situation from a fresh perspective. By granting what is inappropriate, by rewarding people for unacceptable behaviour, you are innocently training them in ways that will make it extremely difficult for them to relate to other people successfully and will greatly interfere with their entire process of rehabilitation. It is vital to remember that people in your care, regardless of whether or not they have schizophrenia, rely on you for the setting of reasonable limits; limits that will teach them how to manage and survive in the real world.

Be aware that too much caring contact can make matters worse

This links in with the previous principle of unconditional self sacrifice. In some circumstances, your relative might overly demand your time and energies but this can be harmful for both of you. The problem of spending too much time with relatives will only be solved when confidence and skills are acquired (through time, experience and awareness) to set realistic limits and to bring situations into line with these limits at a suitable pace. The main point here is that everyone needs space and time to themselves in order to maintain healthy relationships.

Maintain and establish friendships

It’s a good idea to maintain your interests, hobbies and friendships, particularly those that take you outside of the home. Again, this links in with the above principles. Although this may seem difficult to do at first, when everything is confusing and you feel much of your spare time is occupied, make this a goal to aspire to.

Pay great attention to the needs of other family members

All members of the family are equally important. The fact that, for example, one person in the family develops schizophrenia does not mean that the other family members now need less attention. Brothers and sisters may also find themselves in distressing situations: friends may have stopped visiting and their school or university work might be suffering. They will need your attention as well. Sometimes the experience of schizophrenia can cause a divide within the family, just at a time when mutual support is vital. It is very important to try and encourage the family to maintain a united front, rather than to separate at this time. Try and agree on a common approach so that options can be discussed and responsibility shared.