Overwhelmed

Wendolyn Markcrow had been caring for her son, Patrick, who had learning difficulties, for 36 years. Yet on Easter Monday, after Patrick had spent the entire day listening to an Elton John CD and shouting the word “Elton” over and over, she reached the end of her tether. Something inside her snapped and after giving Patrick 14 tranquillisers she suffocated him with a plastic bag, before attempting to kill herself.

It is a shocking story, but when you look at the circumstances in which Markcrow found herself, it is clear she was under enormous strain. Patrick had Down’s syndrome and autism; he would punch himself repeatedly in the face, had toddler-like tantrums and hardly slept at night. At times he lashed out at his mother, who struggled to manage his 16-stone frame. Without the right support, who wouldn’t feel physically and emotionally exhausted after caring for someone with these difficulties for three and a half decades? The immense pressure Markcrow was under seems to have been recognised by the judge who handed her a suspended prison sentence. It became clear during the case that, for whatever reason, Markcrow was struggling to care for her son and did not have the support she needed. However, her local authority, Buckinghamshire Council, insists help was offered but refused.

The case carries strong echoes of the 1999 deaths of severely disabled Richard and Robert Turnbull after their mother, Janquil Turnbull, gave them a drug overdose and suffocated them. Isle of Wight social services claimed they had sought to provide the Turnbulls with respite care and had fully assessed their situation. But, although an inquest cleared agencies of failing in their duty to the family, health and social services were criticised for not doing enough to help. Janquil Turnbull, who spent six weeks in prison before being released on bail, later pleaded guilty to manslaughter on the grounds of diminished responsibility and, like Markcrow, received a suspended sentence.

So Wendolyn Markcrow’s situation is hardly unique. Too often, parents cope for years in unimaginable circumstances, often with little sleep, until they reach a point at which they become desperate for the right kind of help and can manage no longer. That Markcrow reached this stage is evident, but it seems that many families are pushed to the brink. A survey by Mencap found that “breaking point” is reached by eight in 10 families caring for someone with severe or profound learning difficulties.(1)

But how many parents “on the brink” entertain the notion that their children’s lives should end? Richard Curen, director of the learning difficulties charity Respond, says it is not unusual for parents to have murderous thoughts and fantasies. He says: “A lot of parents think but don’t act, and many have feelings of hatred. It’s normal and natural but it’s not talked about. It’s only when cases like this emerge that people are able to talk about it again.”

When parents meet regularly in support groups and begin to trust each other, they often voice feelings that they have never dared mention before, for example, that they have had thoughts of their children being involved in fatal road accidents or having terminal illnesses. “They are able to share the fact that sometimes they feel that their child would be better off dead,” says Curen.

This may be because they are worried about their child’s future once they have died or, like Markcrow, they may be at their wits’ end trying to cope with their child’s disability.

Some feelings of resentment might be inevitable in the context of the additional pressures faced by families with disabled children. As well as exhausting caring regimes, these families may suffer financial hardships (it costs up to three times more to raise a disabled child) and problems with work or housing. And that’s not to mention the impact on carers’ own health, relationships and family life. Being able to share their feelings can be cathartic for parents, and Curen would like social care professionals to initiate open discussions. Forcing parents to hold their thoughts in, he fears, could lead to more cases like the Markcrows’. He says: “This woman must have held on for a long time to very painful feelings and thoughts, and instead of a place where she could talk about them and get help she did the other thing and acted them out.”

Also, for any parent with a disabled child, time away from their caring role is vital. Short respite breaks give everyone a chance to recharge, but too often this support only materialises when parents are already desperate. As Jill Harrison, director of policy at the charity Contact a Family, says: “The way eligibility criteria work for services means that you aren’t entitled to receive services until a point of breakdown. Services don’t kick in until you reach crisis point or are in pretty desperate need. Getting help at an earlier stage is almost impossible.”

Harrison says that, if help was provided earlier, it would not only save the family distress but would serve as a preventive measure. Her charity has heard of two other cases where a child has been killed and advises anyone feeling desperate to call a helpline.

Finding respite help for young children can be difficult enough, but for parents of adult disabled children the process can be even more tortuous. Norma Brier, chief executive of Norwood, the children and families’ charity, says: “Their children have gone past the magic age of 19 at which point a lot of facilities are no longer available. The resources change to adult social services money and become very scarce.”

She gives a recent example of an elderly mother who had to go into hospital. “The only respite she could be offered was hospitalisation for her son, an absolutely dreadful response as he didn’t need hospital care. In the end she put off having her operation.”

Lack of respite facilities for disabled adults is a familiar problem. Local authorities are reluctant to invest in facilities that need to be staffed permanently but which then may stand empty on less popular days for respite care, such as Mondays and Tuesdays. Perhaps as Brier says, one way around this would be for voluntary organisations to collaborate and provide respite care for several local authorities.

Although some parents may feel that their disabled children are completely dependent on them and cannot be looked after by others, many say guaranteed breaks would make all the difference to their lives, and given the money they save social services by taking on the caring task surely a few days off each month is not too much to ask. Besides, if investment in respite facilities saved just one person’s life, wouldn’t it be worth every penny?

(1) Breaking Point, Mencap 2003

‘Respite care is a lifeline’

Gail Hanrahan cares for her 15-year-old son, Guy, who has Angelman’s syndrome, a rare chromosome disorder. He has severe learning difficulties and is dependent on others for all aspects of his care.

Hanrahan was not surprised by the case of Wendolyn Markcrow. “Her case is extreme but her situation is not unique. There are thousands of people in her position and a lot of people who feel as desperate. I know of a woman who is 95 and still caring for her daughter who has Down’s syndrome without any support.”

She says respite care is an essential preventive service. “People who use it feel it’s a lifeline. It helps to keep families together. You can cope with the next crisis if you know a break is coming along.” She gets respite for Guy four nights a month, but knows that many families struggle by on a quarter of this. “Some families limp from one break to the next but, like a plaster on a gaping wound, something will crack eventually.”

Families should be assessed according to what they need rather than according to the resources that social services have available, she says. Hanrahan also wants the government to ring-fence money for short breaks and respite care.

“It’s getting harder to get help,” she says. “We are fighting social services, local authorities and the government. The only time someone listens is when a tragedy occurs and makes the news.”