Living with Down's syndrome

Bertha Limacher has never had so many strangers in her home. The BBC have been in, she says, and Meridian, and a number of the papers. She has her treasured photographs to hand, ready to show off. The man from the local paper asks Bertha to lean over the pictures, arms around her husband and daughter, and point at them. He snaps the shutter a couple of times. It is too much for Mr Limacher, who covers his face with his hand and breaks into rasping sobs.

It is just over a week since Bertha's daughter Brenda Marshall died. It was a messy, public, deeply distressing death. Early last Friday morning, Bertha found her daughter in bed, moaning. She had been suffering from a bad chest infection and had been complaining for a few days of feeling very unwell; Bertha couldn't rouse her. She called an ambulance, and took her to hospital, 45 minutes from their home on the Isle of Sheppey in Kent.

They arrived before 7am. Brenda spent much of the morning on a trolley in a corridor outside the X-ray department. The hospital was busy, there were no ward beds available, and the nurses were rushed off their feet. Bertha, who is 76 and disabled, had to get Brenda onto a bed pan, with the help of her grandson's partner, who is pregnant. Finally, at 3.30pm, a ward bed was found for Brenda, almost nine hours after she arrived at the hospital. She slipped into unconsciousness, and died the following evening of pneumonia. She was 52.

Brenda Marshall's death has become the latest in a long line of supposed NHS failures. Press reports have implied that if she had been given a bed earlier she might have lived, although the family don't know if they believe this. Their grief is ragged, devastating. But, says Bertha, she always knew she would lose Brenda: she just hoped she wouldn't go before her.

Brenda Marshall was born with Down's syndrome, and to her mother and her sister Robina, 45, the sorry manner of her death is the least interesting part of her story. For more than half a century, Bertha has been responsible for every aspect of her daughter's care. Brenda couldn't walk more than a few steps without becoming breathless, could not wash or dress herself, and had to use a commode during the night. In her last few years she needed help in the toilet. As Bertha herself became more aged and less able, the needs of her daughter became more demanding. "I tried to treat her like an adult," says her mother, "but it was like caring for a baby for 52 years."

Down's syndrome is not a disease from which people can be said to "suffer". It is, rather, a genetic abnormality, in which babies are born with an extra chromosome. Those with the condition are prone to a number of illnesses, including heart problems, difficulties with hearing and vision, and thyroid disease. Their experiences, however, can vary enormously. Many people with Down's syndrome live very full and independent lives, holding down jobs and sustaining relationships. Others require much more intensive care.

Bertha was 24 when Brenda was born in 1949, at her home in west London. She was her first child, and Bertha didn't know much about babies, she says, but she knew something was wrong. "She was a bit funny, she used to go blue, and it would take me hours to feed her. I don't know if she couldn't suck, or what." She took the baby to her doctor, who referred her to Great Ormond Street hospital for tests. "They turned round and said that she was a 'mongol'. They called them mongols in those days. And of course I didn't know what a mongol was. I came out crying my eyes out."

The hospital, she says, offered no explanation as to what was wrong with her baby, or the kind of difficulties she could expect. "They just said to me, 'Do you want to put her away, or do you want to keep her?' And I said, 'Good God, I wouldn't want her put away!' So they just sent me away from the hospital."

Brenda started to walk when she was three, copying her younger brother. After a few steps, however, she would have to crouch down to regain her breath. When Brenda was six or seven, Bertha's mother bought her granddaughter a wheelchair. "She said, 'You can't let her go about like that,'" says Bertha. "Mum paid for the wheelchair. Nobody else helped. I had no support. Nothing at all."

At the age of 10, Brenda started at a special school for people with learning disabilities. "She loved it," says Robina. "She used to go in fancy dress. They tried to teach the children to read and write, but Brenda wasn't able. But she loved books all her life. She collected books about Diana, and she had some horse books; she loved them." Then, when Brenda was 13, Bertha was given the first detailed information about the nature of her health problems. Brenda had a series of tests that established that she had a hole in her heart which, doctors said, was inoperable. All of her teeth were also removed, something which was once not unusual with people with the condition. Bertha was told that her daughter could expect to live no more than six years.

From there their lives settled into a pattern that was both extraordinary and utterly mundane. From the day she left school at 16, Brenda attended a series of day centres for people with Down's syndrome. She was a very placid person, says her mother, and lived a happy life, "as far as we know". Brenda had a boyfriend, Gordon Robins, when she was in her late teens. "He used to come to the house," says Bertha. "She wanted to get married and have children. He actually asked me if he could marry her, and I said, 'I don't think so, darling.'"

Bertha feels that at the time she was the only one who could provide properly for her. "Brenda couldn't do anything," she says. "She couldn't walk far, and she couldn't cook or anything like that. She couldn't open a tin of baked beans. She couldn't read or write, she just managed to write her own name, and then towards the end she couldn't even do that."

Bertha had cared for her father until he died, then when her mother became too unwell to cope with her large London house, the whole family moved to a bungalow in Sheppey. Her mother was alive until five years ago. "I used to go to work; I used to clean. I had to work to make ends meet." But she could only take jobs that allowed her to be at home while Brenda was home. She could never leave her on her own. More than once, Brenda's heart stopped completely. "A couple of times, not just recently, she actually died in front of us and [my husband] massaged her heart and got it going again." It happened if Brenda got very agitated or upset. Deaths, in particular, upset her.

There is increasing evidence, as the general care for people with Down's syndrome improves, that they may be more susceptible to Alzheimer's disease, from as young as 30. Brenda had always prided herself on remembering everyone in the family's birthday, including those of all of Robina's 10 children. But in her last years, she started to forget simple things like the day of the week, or would get confused as to which room was which. Bertha could no longer cope on her own, and had to have someone in to wash and dress Brenda; someone to do her hair, someone to look after her feet. It was arranged through the social services, but the cost was met by the family. It was only in the last few months, when Brenda started at a new day centre, that she was allocated a one-to-one carer.

Brenda Marshall's family were not trained in the latest, politically correct, ways to look after people with Down's syndrome. No one thought to tell them. Had their daughter been born a few decades later, she might well have been able to attend a mainstream school. Brenda would have had support from a health visitor as she was growing up, and she would probably have been referred to an educational psychologist, a social worker and a psychologist. Brenda might well have been able to have lived independently in sheltered accommodation; she might have married.

Brenda's story illustrates how far things have come in the way we treat people with learning disabilities. And yet there is still some way to go. A recent report from the Down's Syndrome Association said 28% of parents of a child with the syndrome felt their child had been discriminated against in terms of health care.

But there's no doubt that Brenda was lucky: her family loved her fiercely and was instinctively hostile to anything that diminished her individuality. Healthcare professionals had talked to the family about different "classifications" of Down's syndrome. "They used to be As, Bs and Cs," says Robina, "the As were the best." Brenda, they were told, was an A. "But they are not a number. They have all got a name. They are all individuals. Brenda said to me once, 'I'm not the different one, you are.' As far as Brenda was concerned, all her friends were Down's syndrome; we were the odd ones out."

After spending the best part of her life as a carer, Bertha feels utterly lost without Brenda. She doesn't know what she'll do with her daughter's porcelain dolls; she doesn't want to give her books to a library in case they are destroyed. "I find at the moment I can have a longer lie in bed," she attempts to joke. Her voice cracks. "I used to have to get up at half past five; this morning I didn't get up until nine o'clock."

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