The tough lives of learning difficulties carers

Parents who are carers often do a good job despite leading chaotic lives, writes Jennifer Harvey

I have to admit I’m a bit of a hoarder. When sorting out my attic recently I found several “Coal Not Dole” posters, a Maggie Thatcher Halloween mask and a child’s potty (my youngest is 21).

As I recall, the potty was kept for many years as a contraceptive – on the basis that if you get rid of the last of your baby equipment you’re bound to fall pregnant.

So when I had to visit a carer who is also a hoarder I felt some affinity with her. It was quite hard to get passed the door and find somewhere to sit when confronted with all the stored items which might come in useful one day. I had to concede it was an odd way to live, but just a hop, skip and a jump from my cluttered attic.

The trouble is, when you are a carer for a person with a severe learning difficulty, people are more likely to make judgements about the way you live, and your ability to care.

Most of the carers I come across in the course of my work do a wonderful job. But their ability to do this bears no relation to the tidiness of their homes. Houses are for people, not people for houses.

I have occasionally been in immaculate houses in desirable areas, and met carers who control their relatives’ benefits, but give them no real choice in how they live.

They may have two cars, but be unwilling to use them to benefit their sons or daughters.

And I’ve met carers who live unconventional, sometimes chaotic lives, but are striving to do their best for their sons and daughters. They may have no car but help their relatives to travel where they want by bus. They may be suspicious of professionals and may have good reason to be. Sometimes we are too quick to judge others.

There is such a thing as “good enough parenting”. For most of us, that responsibility ends when our children reach 18. When your son or daughter has a learning difficulty, that role can continue all your life, and there is no prescribed way of being a good carer.

Chances are, if the young person grows up to be happy, healthy and sociable, you’ve done a good job, even if your house is a mess and you’ve never got round to throwing out your baby equipment.

Jennifer Harvey is a day services co-ordinator working with people with learning difficulties

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