Private Lives: A desperate plight for old and young

Caring for an elderly relative is no easy task, and many find the strain too great. By Jack O'Sullivan
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The Independent Culture
MARY STANSBIE, 78, had been dead in her bed for up to three weeks when her body was discovered by a district nurse. "Help me" and "No help" were scrawled on her bedroom walls.

Her case sounds like a tragic account of an elderly person dying alone, bereft of friends or relatives. You imagine her on her own in a high-rise flat, her absence unnoticed. Yet Mrs Stansbie died in her family home in Smethwick, West Midlands. She lived there with her daughter and two granddaughters. Apparently, they had not realised she was dead.

Put so bluntly, the story seems as bizarre as it is sad, a tale of extraordinary suffering rather than a comment on everyday life. What happened to the family ties that provide comfort in people's final days?

Yet the inquest last week into her death highlighted common problems when elderly people seek sanctuary with their families. Ms Stansbie suffered from dementia. Her daughter said she often took to her room for weeks, armed with biscuits and other food. The breakdown in relationships which took place in this instance is not unusual.

Take Thomas, from Yorkshire, as an example. He had to give up his job to look after his elderly mother, who was paralysed and unable to speak. So she was totally dependent, but able to give him little feedback for his efforts. He had no break for four years. "He rang to say that he had hit his mum out of sheer frustration," recalls Jill Harrison, who runs the Carers' Helpline. "He had hit her quite badly, and felt dreadful when he rang us. He was worried about how far he would take it."

Resentment can poison life with a vulnerable old person. Whereas, in the past, daughters - who still do most of the work - might have been at home in any case, these days looking after an elderly relative requires a dramatic change in lifestyle. Suddenly, the hospital rings to say that your mother is being discharged, and she cannot manage at home. She needs to stay with you. Yet she could be a person for whom you never felt much affection.

Ms Harrison describes a caller who had been abroad for years, and was told by social services that her mother needed residential care. "Since her mother lived alone, the house would be sold to pay the fees. But that was money the daughter had been hoping would revive her business abroad. So she returned to Britain to look after her mother, and became very resentful. She told her mother, who had had a stroke, that she did not intend to be around all the time; if she had a fall, then tough."

That might sound like an uncaring statement. Yet those who look after old people grow desperate. "Looking after someone can include never getting a good night's sleep, and being on call 24 hours a day, every day," says Denise Malcolm, of the Carers' Association. "You may never be able to take a holiday. It can be impossible to attend family events such as weddings because there is no one to look after Mum. Couples may also not agree about an elderly person coming to live with them. A woman may be keen to look after her own mum and dad, but not her partner's stepfather.

"There can be a serious money problem," says Jill Harrison. "A carer will say to us, `I have to live on pounds 38.70 a week invalid care allowance, yet Mum has a good pension from Dad and an attendance allowance, but will not give me more than pounds 10 a week for food. I'm getting into debt.' We can't condone the misuse of elderly people's benefits, but it does happen. Money can get very tight."

Ginny Jenkins, director of Action on Elder Abuse, encounters some of the worst cases. She leafs through a log of calls to the charity's helpline. "Here is a case of an 80-year-old mother who provided a home for her alcoholic daughter in return for being looked after. The daughter had been on a drinking binge, wasn't feeding the mother, and wouldn't let anyone into the flat."

Professionals warn against painting a picture of widespread neglect, although there is little research to establish its real prevalence. The experts distinguish between the rare sadistic types, who mistreat elderly relatives because of personality problems, and the majority of abusers, whose behaviour is a reaction to stress.

There are potential legal remedies. The Government is considering introducing protective legislation for vulnerable adults. The 1998 Family Act could also be activated to protect old people. Designed to deal with domestic violence, it allows a perpetrator to be excluded from a property even if he or she owns it.

However, in the main the answer lies in providing better support for those who do an extraordinary task. If you are desperate, the helplines all say, walk away before you do something dreadful. Any carer can ask social services to assess their ability and resources to do the job - a job that carries many of the burdens of child care, with few of the rewards.

The Carers' Line is 0345 573369; The Action on Elder Abuse helpline is 0800 731 4141