Get in touch to create your own Stepping Out event today
Jean, a Stepping Out volunteer in Hertfordshire, has been carer to her son, David, who had uncontrolled epilepsy and cognitive difficulties
‘My object is just an ordinary bunch of keys with a car key and a front and back door key on it. It reminds me of very sad times. When my son David went into his teenage years his epileptic seizures went from being overnight, when he was asleep, to during the day as well. He’d gone to secondary school and friends he went to primary school with had used David’s disability to make themselves look better and make new friends. He was bullied and in a bad place. And he was angry with me .. he was angry with anyone including me. I didn’t have to say much to get on the wrong side of him.
I would go about my household chores while he was about. I would be going out by the backdoor to do some gardening or hang out the washing, whatever. And when he was in a really bad mood, he would quickly … after I’d gone out … go to the back door, shut it and lock it, and I would be locked out. I couldn’t get back in the house. Which was obviously very trying and distressing.
I would then have to walk to another street where my friend lived and sit and cry at hers for a couple of hours, then walk back. By then David would have realised what he’d done and would let me in the front door and quickly run upstairs to his room.
One day when I was out in the garden, he locked me out again. I was banging on the window where he was, shouting, ‘Let me in, let me in’. We had a computer in the room and he took a load of A4 pieces of paper out of the printer and put them all up in the window so I couldn’t see in. It was awful.
He’s 36 now. He has been in supported living since he was 18. Because once the seizures got worse, I knew as a single parent I couldn’t cope with it. There was one time it really did bring me to my knees. Then I internally made the decision that when he was 18 he would have to be cared for where he could get proper 24-hour support, not me trying to do it on my own. He lives down in London now and is in a really good place.
I went down yesterday and he was OK. I took him to Battersea Power Station and we had the afternoon there. He now knows what bad times he went through. I said to him, ‘Do you remember when you used to lock me out of the house?’ He went, ‘Oh yeah, I’m really sorry about that.’ I said, ‘No, no, it was just how it was at the time.’ In fact, we’re past that now. Looking back, you can always laugh at what happened. But at the time I was full of despair. Having to walk down the street in a pair of slippers or sometimes just in my socks. It’s not nice.
I’m a rambler and I got to hear about Stepping Out With Carers in a magazine. They were looking for volunteers to help with the walks. I went along and discovered what a wonderful service, what a wonderful charity, it is. I’ve never been as a carer. I know what it’s like to be a carer, but I go as a helper. I know what carers need: they need space and they need to be able to talk. Just to have that back then would have been a Godsend, it would have made a difference.’