For About and By Caregivers
Family and Care in the Community
By Mark Ellerby


I think the social isolation of people with mental illnesses experienced as a result of the policy of  care in the community magnifies the therapeutic importance of the family immensely, even and especially whilst living in Sheltered Accommodation. I have friends including staff members at the project I live in, but being able to ‘go home’ as I call it is still tremendously important. It helps that my parents know what to do in a crisis and learned this from experience. Otherwise, it might be that going home to stay overnight (as I do) would not be possible.

It also helps in that a change of scenery is tremendously important. A change is, I have heard it said, as good as a rest. It is even better, following this line of thought further, that you are able to go on holiday with relatives, at least once or twice a year, to break the year up and especially during the long winter months. People who have supportive families are also a lot happier around Christmas time and more so if you have nieces and nephews (I have one of each). Without this contact, there may be a need for anti-depressants.

I guess in a way I am very lucky to have all this family input. Years ago, they say, if any one in the family had a history of mental illness, it was never talked about. With the media image of ‘lunatics’ I am sure families still have a hard time coping with the stigma. Carers need carers themselves, but may perhaps experience isolation because they feel they can’t mention problems like this to friends. As a result, there is a great reliance on health care professionals who are already overworked.

Often, too, it is only the immediate family that has much direct contact with medical people and social workers and their understanding of the acute nature of mental illness, the ins and outs of hospital, stigma and many other aspects will not be shared by other relatives. This can create the odd problem when your parents go on holiday and there is a crisis. I guess the first impulse is to ring your family for help, but they cannot always be there. Ringing another relative instead can be a bewildering experience for them, so sheltered accommodation is a very good answer here in case of emergency.

Another important point is that severe problems with paranoia fuelled by general hostility to mental illness from the community can mean that everyday functions like going shopping are very difficult. Again, going with a family member to the supermarket or shopping mall cannot only be supportive, but also vital. This also gives an experience of normality and, to that extent, overcomes feelings of social exclusion as well. Many people I know do not have the confidence to do this and in my case family support was needed. It also helps you on the way to greater independence.

The opposite effect is also true – that families have to push their loved ones to go out and do things because it can sometimes be too easy not to confront these problems. You can easily, for example, avoid going out and get just about anything off the Internet. Learned behaviour from bad reactions to going out can lead to a phobia, so getting a push to go can in the end increase your confidence. There are no hard and fast rules for when to push and when not to, but I think this is an important point. It can just as easily be argued why go out if it makes you ill which again is, I think, a legitimate issue.

Another large area is family support during visits to doctors and psychiatrists, etc. This is important because the turnover amongst medical personnel is quite high and they do not have the time to ponder anyone individual case for long nor to fully read the case history. Family will, as a result, probably know a lot more than the doctors and social workers involved and, in my case, have often been the only constant element throughout an illness which has varied a lot through fifteen years of problems. As a result I rely quite heavily on having someone to assess the trend as compared to the past.

There is also, I think, a professional stereotype that parents worry unduly — especially mothers — and press the panic button at the first sign of trouble. This is a tricky one, but can be overcome in the following way. The first thing to do is indeed to call for a doctor at the first sign of trouble and to say why regardless of what the doctor might think. My family has had me sectioned several times. When I got to hospital, it became very apparent to the doctors why. From that moment on they paid very close attention to my mother’s opinions and a social worker even remarked “No one knows you like your mother!” Schizophrenia is always taken seriously by doctors and repeating episodes are very common too, so ringing doctors should not be seen as over reacting.

In the end, there are probably a myriad of other ways in which families help the patient outside of hospital including all the ways we have and need to rely on them during normal life. The emotional aspects, feeling wanted, being loved are the most profound and important. Loss of this aspect through stigma or whatever just creates a void here and makes the negative experience of the illness worse. Again, there are so many potential positives. I have been ill for 15 years, but never once have had depression. This, I think, says a lot about the importance of family to mental illness.

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