A Carer's Life

The life of a Mental Health carer can be ultimately rewarding… but that is only a very minor part of it. There is a wealth of support available for carers, but most carers are not aware of that support. Even if they are aware of it, they seldom actually get it, because the procedures of the authorities are so convoluted and bureaucratic, and the forms used for assessment are so inadequate that it is impossible to convey the problems being experienced, even if they are able to express their concerns.

Most Carers really do not understand that they are carers for a long time, and find it difficult to accept the fact as there is still a stigma associated with mental illness. This is hardly helpful for someone who is suffering from the stress and exhaustion inevitable in a Mental Health carer.

The following is a fairly typical experience in the life of a carer.

A person became ill in 2004, was admitted to psychiatric care and had a bad experience in hospital. On discharge after 4 months there was some improvement but she could not resume her previous life because of problems with concentration, memory and confidence. There is no 100% recovery from mental illness.

This impacts on the carer, who now has not only to work full time to provide a living, but has to handle all of the household jobs. This is immensely draining and has the effect of making the carer ill, leading to six weeks sick leave with stress.

Life for the couple is changed, the dynamic of the relationship is changed forever, this takes a great deal of adjustment by all concerned. The changed dynamic affects the whole family, parents, and the children.

The carer becomes so wrapped up in the role, is so beaten down by it, that all conversation leads back towards mental health issues. Most people find this difficult to cope with, and slowly the circle of friends starts to shrink, the invitations stop coming in, the phone stops ringing… the carer is now isolated in social life as well as in terms of the caring.

The service user and carer cannot give the same support to the children, who soon start to feel alienated and deprived because they stil have both parents, but much of the support they have previously experienced is diluted, cracks develop in the relationships. This impacts on everyone involved.

For five years the carer cares for the service user whose life is changed, old interests can no longer be followed because of the personality changes and lack of concentration.

Some 5 years later the service user, after a series of personal traumas, sinks back into acute psychotic catatonic depression, they withdraw from self care, eating & drinking and life.

The Service Providers try to treat this in the community, their daily 20 minute visits do not help and an elderly mother has to care whilst the carer is away at work . By this sacrifice she loses her own social life, being unable to get out during the day, being too tired and stressed at night and weekends.

This situation is simply not acceptable and the mother eventually succumbs to nervous stress, making her ill. She realises she cannot cope with being a carer, and at her age, she shouldn’t have to. This of course then makes her feel guilty, she tries to do more to make up.

The service user‘s quality of life is minimised by the illness, the carer’s quality of life is minimised by the pressures of caring for both the patient and the mother, as well as feeling the tensions created with the children. Of course there is no time, or energy, for a social life. The mother, 87 years old, has sacrificed her own life to help out, and the children are feeling alienated and have lost a large part of their parental support.

I know this story is true, because I am the carer, the service user is my wife. Throughout her illness we have found that the NHS Mental Health Service has totally failed to deliver the kind of service that we should be able to expect, and even worse has shown no real interest in dealing with the problems they have created.

It should be said here, our experience in the “care” of the service has been atrocious, many other people I speak to raise the same complaints and issues, but there are doubtless many people who have had a good experience. The question is simple. Should anyone have a bad experience. Yes we all make mistakes, but we should learn from them, adjust, put them right and move on, not put heads into the sand and just consider the carer is being unpleasant or unfair for pointing out the problems.

Why is this? The Service Providers do not see service users and carers as people, they are statistics. The Service tries to isolate the patient and never think of considering the family, which they rely to give the support that they can’t.

In reality, latest estimates suggest that Carers save the NHS some £119 million pounds per annum. Surely it is worth supporting these people, many of who are at risk of becoming service users themselves due to the stress of having no support.

As a carer I am not looking for sympathy, all I seek is for the NHS and Local Government to give carers the respect and support they deserve and for the public to enter into a debate on mental health and start to understand, that way we will break the taboo, and get understanding and support for carers and mental health service users.

There is support out there, I would encourage all carers to obtain a copy of the Carer Information pack which should be available from GP’s, and Psychiatric Wards. The pack will direct you to all of the voluntary organisations in the area who can support and encourage the carer.