The Simon Heng Column

This week, Wendolyne Markcrow was convicted of manslaughter for killing her son, Patrick, by feeding him sleeping pills and then suffocating him with a plastic bag. Patrick had autism, needed constant care and persistently tried to harm himself, blinding himself in one eye. His mother was his only carer.

The representative of Buckinghamshire adult care services stated that “over time she accepted less and less help because he was very dependent on her”. She herself had written: “The crisis is not going to go away. I really must have some support soon.”

Adult care services had offered help, placing Patrick in a day centre for respite care from which he was eventually excluded, and a social integration team which closed. Patrick’s mother, it seems, gradually began to lose faith in everyone else’s ability to help and her own ability to cope. The judge at the trial acknowledged the “unbearable pressure” she had been under for more than 30 years.

I have met a number of parents who care for their adult children. Apart from their obvious deep love, nearly all of them shared a look of careworn desperation, perhaps from years of wondering what the next crisis will bring. As someone who has learned to cope with this for myself, I wonder how much more difficult it is to live with this sense of impending catastrophe for someone else: your child, your partner, your parent.

Perhaps there are small triumphs each day which lift the spirits. Perhaps  friends and family can offer practical and emotional support, but there must often be an increasing sense of
isolation. It’s only right that “informal” – a wholly inadequate phrase – carers have become the focus of attention for local and central government.

Practical support, respite and home care ease the burden; support groups may make the emotional load lighter, but carers deserve some innovative changes in the same way as community care legislation changed things for service users. After all, given the billions they save the state by claiming only the carers allowance, should they be forced to live in poverty?