It's hard work looking after mum: Adult concerns and responsibilities come early to children who take care of invalid parents, writes Angela Neustatter

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Indy Lifestyle Online
Early each morning nine-year-old Nicolla Wilson gets up and tidies the house, washes up any dishes from the night before and prepares her own breakfast before leaving for school.

At the weekends she and her 11-year-old sister, Kimberley, do the washing, shopping and a clean-up of their terraced house in Dagenham, east London. Their brother, Luke, 15, does the ironing, heavy chores and a bit of DIY. He took Nicolla to school for the play she performed in recently, and stayed to watch and offer praise afterwards.

Since their mother, Annette Wilson, 33, contracted multiple sclerosis 12 years ago, the children have had to grow up quickly and, increasingly, take responsibility for the domestic chores.

'It has been very difficult to realise that I need to rely on the children for this and I often feel guilty,' Ms Wilson says. 'I believe in children taking on some responsibility in the home, but I do not like the idea that they feel they have to care for me. It is like the parental role being reversed and I fight very hard to do as much as I can. Even though I can't take them out swimming, to the pictures, or to play sports as I would so much like, I can be here helping with homework, listening to them, talking to them and being a mother of the family.'

Ms Wilson's role is common in families where children are forced to take on the role of carers. Their father lives nearby, but she says: 'I look after them on my own because that's how it has had to be. I have turned down the offer of home help for the moment because the children seem to be coping. I really don't want someone coming in because they might interfere with the way things are. What I do want is help in making my body work better and I'm still waiting for physiotherapy.'

In the sitting room, photos of the children cover the mantlepiece and Nicolla is jumping around, determined to tell her story: 'I like looking after my mum. I like making things nice for her and I like going out and buying her presents because she can't do that herself. Sometimes I get tired with it and don't want to clear up, but she's not strict if we leave a mess. I don't go out much after school. I just stay here with my mum.'

Luke, a tall, athletic boy, can only remember his mother needing help and, as the eldest, has carried much of the pain and strain.

'When I was little, I wished mum could come to parents' evenings at school and could take me and friends out, and now the strain is feeling that I have to watch out for mum and knowing that I have to be here with her and my sisters,' he says.

'I've also had to take on getting the forms she needs for her benefits and things and I've had to learn to fill them out and then I take them to the town hall or the post office. That's probably been useful because I understand how to do it. I don't go out very much, although mum says I must if I want to. She encourages me, she doesn't make me feel guilty or anything like that if I want to be off with my friends.'

Ms Wilson is determined her illness should not interfere with the children's schooling: 'They are bright kids and I really would feel guilty if my needs messed up their chances for the future. I have made sure they don't miss school and that they have time for homework. If I had an appointment during the day or things were difficult for me, I'd try to find a way of coping rather than have the kids stay at home.'

She takes a combative attitude to her illness: 'I'm learning to drive so I can be a bit more independent and do more with the kids, and even though I can't lift heavy pans or chop food very well, I am involved in making family meals. Although it's slow going, I go up and down stairs by myself, I look after my own personal cleaning - I'd be horrified to have the kids do that - and I like to think we have fun together.

''I think having the children around keeps the illness at bay, but I'm also aware that if the MS gets worse, the load would fall on them and I can't bear the idea of that.'

Ben Locker (not his real name) is now 20 and has cared for his mother, who is disabled, has an acute allergic illness and spends most of her time in bed, since childhood.

They live on a bleak housing estate, where violence erupts regularly, in the north of England. Ben does the housework, laundry, ironing and cooking and has learnt through the years to battle with a local authority that both he and his mother believe views their needs as a nuisance.

'As a child I didn't think about asking if I could have some help,' he says, 'and when people came in to see about mum they didn't seem to think it strange that I was doing all the looking after her.

'I can see now that if someone had come and helped with the shopping and the washing and taken mum out sometimes to get fresh air, it would have taken the burden off me quite a lot. But all we were offered was a home help and she seemed to really resent my mum wanting things done the way she liked, so that didn't work out.

'It was when I was in secondary school that she really got bad, and I had to spend most of my free time on the things that had to be done. If I had homework, I'd do it in the week, but then there would be a pile-up of jobs for the weekend. I found it hard sometimes when my friends were going off to play football and I couldn't go. I knew it wasn't mum's fault and she used to tell me to go, and she gave me money for sports and things, but I knew everything would get on top of me if I wasn't careful. I took a Saturday job when I was 15, but it only lasted three months because I couldn't handle it - I got too exhausted.'

Ben's father, whose violence Ms Locker blames for her chronic back pain, left home when his son was five. When Ben went on to college after secondary school, he could not cope, his mother says. Ben acknowledges: 'I do sometimes look at what caring has done to my future. I don't have a job and I am aware that any plans I make must take account of my mother's needs.

'I might sound as though I resent what I've had to do and mum for being ill, but that's not it at all. I think I have got some very positive things out of what I've had to do, and I do have a close and loving relationship with mum.'

Ms Locker agrees and talks with enormous pleasure of the way she and Ben discuss everything and that they have a united front against what she sees as the puzzling, callous attitudes of those who are supposed to be offering help. 'Nothing has been easy. Over the years Ben and I have had such battles trying to get the kind of help we wanted, but it always seemed to be a question of being given what somebody else decided was right, not listening to us. Right down to a bath seat which the council came to fix. I wanted one without a varnish because I have this allergy and they said I must take what I was given. So Ben had to get the varnish off.

'As a feminist I believe sons should help in the house, so I would have expected that anyway, but Ben has had to do too much.

'If there had been support for him, he could have done some of the caring, and that is something he wants to do, but also he could have had time for a proper childhood. Instead his life has been, and still is, devoted to my needs, which is not what I want, but there's no choice. The good thing is Ben has always been able to voice his frustrations and we have talked about them. Obviously it's different now he's a man and I'm aware he may want to go away and get married. But he says whatever he does, he'll work things out for me. He's not the type to just dump mum.'

A film about child carers, 'Looking After Mum', will be shown on Channel 4 tonight at 9 o'clock.

(Photograph omitted)

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