Family carers deserve recognition and respect

When a young adult develops schizophrenia, it is entirely different from dealing with the usual problems that affects this age group. And it is entirely different from caring for someone with a physical disease. Mental illness is still seen as threatening and mysterious, with no visible cause. There is fear of aggression and violence. Carers don’t know how to explain what is happening to the neighbours since others do not want to dwell on psychosis. Even family doctors are not comfortable with serious mental illness.

Unanticipated anguish

People don’t make allowances and we spend our time apologising for antisocial or unusual behaviour. Instead of sympathy and goodwill, which would be the response to a person who suddenly had to use a wheelchair, there is stigma and risk of ostracism.

It is hard for those outside the family to understand the stress that comes from such an unexpected and unwelcome event. Normal life becomes practically impossible. You cannot overstate the anguish when a family member goes missing for days. The dynamics of the family are fundamentally altered and relationships between siblings and spouses are strained. Optimism is eroded and may be replaced by hopelessness. 

These are among the emotional problems faced by carers. There are also practical ones. New links have to be forged with clinicians, social workers, teachers, and perhaps the police and criminal justice system. Going to work and earning a living is off the agenda for many of us, meaning that lack of money becomes a problem. 

So the needs of carers deserve understanding. Carers also deserve wider recognition, respect and support for what they do. 

Family members are generally the first to become aware that serious mental illness is developing, and often the first to notice warning signs of impending relapse. 

Appreciating the value of carers

Worldwide, hospital beds are being lost. The supposed reasons for this are met with deep-seated scepticism by those who know the reality of living with mental illness. In practice, it is usually the family that takes the strain. It is we who try to prevent premature discharge resulting in rapid re-admission. It is family carers who encourage compliance with treatment. It is we who step in to help when a person cannot cope with the everyday demands of life. It is often only the family home that stands between the patient and the park bench, or a barely adequate hostel. 

Family members are generally the first to become aware that serious mental illness is developing, and often the first to notice warning signs of impending relapse. Early intervention in psychosis is encouraged, but for that to happen means that someone must alert medical services that things are not right. Carers have their own expertise and should be fully integrated into the processes of diagnosis and treatment. There are confidentiality issues of course, but it would help if health care professionals could be more flexible about respecting families’ independent and valid points of view.

The voluntary and charitable sector – organisations such as EUFAMI in Europe and Rethink Mental Illness in the UK – plays an invaluable role in understanding and supporting family carers, and providing information and practical help. They also offer the sense of belonging to a community or, to use an old-fashioned term, fellowship – which is vital when isolation is so prevalent.

In relation to what they do, the voluntary bodies and the carers who belong to them do not require much financial support. But they do require some; and helping carers cope is a good investment for society. The recent Europe-wide survey has strengthened our case by documenting the issues that carers face and the invaluable contribution that they make.