Caring for the Carers

Part of the debate – in the House of Commons at 6:42 pm on 1st May 1986.

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Photo of Harriet Harman Harriet Harman Shadow Minister (Health) 6:42 pm, 1st May 1986

The desperate urgency of the case for carers is obvious to the carers themselves and to anyone who knows a carer. At the very least, caring for an elderly or a disabled person can mean the loss of social life, job prospects and income, but for many carers it also means emotional and physical breakdown, exhaustion and isolation.

I want to mention the circumstances of one woman to whom I talked in her own home last week. For many years Mary looked after her elderly mother until she died at the age of 84 after a long, depressive illness. Three years later, when Mary was only 48, her husband suffered a massive stroke which left him with pre-senile dementia. It was then that, in practice, Mary lost the husband whom she loved dearly.

It is 12 years since Mary's husband had his stroke, years which have seen her life devastated. She has become totally isolated. She had to give up her job to look after him—a job she desperately misses, not only for the money, but because she enjoyed her work. She has lost contact with her friends. She cannot go out to see them because she has to stay in to look after her husband. When she last invited friends to her home her husband stripped off in front of them, so she feels that she can no longer invite them to her home. Her relationships with her children and the rest of her family have also broken down. Her children find that it is less easy to travel to see her, because they have small children, and she cannot travel to see them because she has to look after her husband.

Mary always gets up before her husband to have her breakfast, because as soon as he is awake she is too busy responding to his demands to find time to eat. She finds it impossible to eat at the same table as her husband, anyway, because he stuffs his food into his mouth so forcibly that he nearly always vomits over his food. He is doubly incontinent. She finds faeces smeared everywhere in the house—up the banisters and up the walls. She feels under strain 24 hours a day. On the morning that I met her she had awoken to find that her husband had disappeared. She spent anxious hours searching for him, with the help of the police.

In those 12 years of caring for her husband, the strain and isolation have broken both her physical and her mental health, but because her husband is doubly incontinent she finds it difficult to get respite care, even in an emergency. She had to be taken into hospital for a cancer operation, but even then she could not get respite care. Mary is one of the many carers whose caring has broken her. Because of the struggle and the strain, these carers feel as though they no longer have the capacity to care, yet they have no choice but to continue.

Mary has never been assessed as to her capacity to care. She has never been offered day or night sitting services, or a home help. She says that she cannot stand it any more. She wants to get her husband into residential care, but she will have to go on looking after him because of the low level of services where she lives.

Mary's case is heartbreaking in the extreme, but it is not unusual. It is relatively typical of the pattern of caring. It is not just part of her life; it is a series of caring roles that have taken over her life. They take up the 24 hours of the day, the seven days of the week, and the 52 weeks of the year. As both she and her husband are not earning, she has financial problems. Her case is also typical of the social isolation that is caused, of the breakdown of family relationships and of mental strain. Carers are six times more likely than anybody else to suffer a mental breakdown.

Mary lives in the London borough of Merton. It is a Conservative-controlled borough that takes pride in its low level of spending on social services. That means that it takes pride in an appallingly low level of services. Although there are carers in all parts of the country, the services that are available to support them in their role differ drastically. According to the Minister, there is a network of professional carers and the only problem is coordination, but whether one gets any help at all depends not upon one's needs but upon where one lives. There is no respite care for those looking after younger, physically disabled people if one is a carer in Conservative Kent or Conservative Richmond. In neither of those counties, unfortunately, is there one of the excellent Crossroads care attendance schemes.