Carer’s Rights Day - Your Chance to Become a Carer

Who or what is a Carer?  There are an estimated 5.5 million men, women and children who hold down day jobs or are in full time education in addition to looking after another family member. 
A carer can be anyone and Carers’ Rights Day on December 8th is a reminder to us all that every day of the year, these people look after someone else with little outside help or support.   They don’t choose to become carers; it happens by chance.
            Jim and Sue Brooks’ daughter, Kelly was born prematurely 11 years ago, weighing less than 2lb. She is a clever girl but unable to walk. She gets around the family home in Trowbridge, Wiltshire on her hands, knees and bottom.  Her parents thought that as a baby, she was slow to crawl but were told that this was due to her low birth weight.  They were assured that she would eventually catch up with other children.  But when she was 2, they were abruptly informed she had cerebral palsy.
‘It was diagnosed and we were basically told to just get on with it,’ remembers Jim, a mechanic.  There are twice yearly health check ups at regional hospitals, but no on-going advice or support in bringing up a child with a physical disability.
When their second daughter Lucy was born, they soon learned how Kelly would have progressed if she had not had cerebral palsy.  Although this knowledge would not have altered Kelly’s prognosis, they feel it would have given them a stronger hand, earlier on to deal with a system that only seems to help those who know how to use it.   
Earlier this year, Kelly transferred to secondary school and it was obvious that she would need an electric wheelchair to get around the extensive school campus.  But the request was refused as the chair could not be used at home as well as at school; the family’s terraced house is too narrow to manoeuvre an electric chair.
‘We’d love to be able to move to somewhere bigger,’ says Sue, a clerical worker.  ‘But we can’t afford to.’  Social services didn’t consider that as Kelly enters her teens, crawling around on her hands and knees at home is inappropriate.  They didn’t think about how the family could be helped to move elsewhere, where the electric chair could be used.  They simply refused the chair.
Following a feature in a local paper a charity stepped in to help.  And it was only after speaking to another charity that the family discovered they were entitled to a disability living allowance. 
Sue and Jim naturally want Kelly to become as independent as possible.  They don’t want her to miss out on the fun things that Lucy enjoys: not only is Kelly envious, but Lucy wants her big sister involved too.  However, without regular physiotherapy from the NHS (they rely on the good will of a private practitioner), nor a social worker to guide them through the maze of possible grants or services available, they wonder how Kelly will achieve the independence she needs.
            Megan, barely a year older, lives a few miles away from Kelly.  She is already a seasoned carer for her younger sister Daisy.  Fashionably dressed, with expertly applied eye make-up, plus a confident and articulate manner, it would be easy to assume that Megan was in her late teens. 
Her mother, Laura agrees.  ‘Because she is so mature, I sometimes have to stop and remember that she is still a child.  She’s only 12.’  But Megan is accustomed to being treated as more grown up than her peers.
‘I’m used to looking after my sister so I look at my mates in the same way,’ she says.  ‘I’m not afraid of speaking up for them.’  Daisy is nine and, with no Dad around, Megan doesn’t remember a time when her Mum didn’t need a hand.   Born with a variety of disorders, Daisy has special educational requirements, low motor skills and is on the autistic spectrum.  She attends a mainstream school with the help of a full-time Learning Support Assistant.    Social Services are aware of Daisy’s condition but give no additional help at home because they know that Laura and Megan cope.  A local charity provides a sitting service for a couple of hours a week, which is the only time Megan and Laura have the chance to spend any time alone apart from when Daisy goes to bed.
‘When Daisy finally settles, we do have a bit of time in the evening, but it would be good if we could do things during the day sometimes,’ says Megan.  It is apparent that good communication is integral to the successful way she deals with her sister’s behavioural problems and that Laura recognises Megan’s need for time and space to herself.
‘I call it ‘me time’, when I can go up to my room and maybe listen to some music,’ Megan smiles.  ‘And mum understands.’   She is also supported with short breaks by the young people’s charity Off The Record. 
Megan does very well at school and thinks looking after Daisy has given her added confidence in her own abilities.  With ambitions to become a translator; she hopes to be able to help her sister and maybe buy her mum a house one day.  But despite recognising that the family could do with more money, she thinks that other things are more precious.   She believes herself to be wise with an early understanding of what is important in life and particularly values her relationship with her mother.  She feels some of her friends don’t realise how lucky they are with two parents and ‘normal’ siblings. 
‘People ought to live my life for a bit,’ she says. ‘Then they’d appreciate things so much more.’  Nevertheless, Megan is upbeat about her situation and her future.  If things at home had been easier, she reckons that she wouldn’t have grown to be so individual and determined. 
‘I wouldn’t call my life really hard - it’s pretty fair.  But it’s different from others,’ she says.  ‘I don’t worry about it.  I just get on with it.’
            In many ways, Ben, a taxi driver from nearby Bath, takes a similar attitude.  He doesn’t even see himself as a carer for his wife Julia who has limited mobility due to chronic rheumatoid arthritis.  After 27 years of marriage, he identifies his role as simply a part of their relationship. 
‘It’s a partnership,’ he says.  ‘I help her when she needs it.’  He can get irritated at times when Julia thinks she can do something that he knows would be easier for him to do.  At the same time, he understands that she gets frustrated when a very simple task that should take seconds, takes her an age to accomplish.  But they have got used to the way things are because Julia’s problems have developed over many years.  If they had occurred from one day to the next, it would be much more difficult for both to accept. 
For Julia, loneliness when Ben is at work can be hard and she wishes she could go out alone and mooch around town.  Shopping is not one of Ben’s favourite occupations and he gets annoyed with inadequate wheelchair access and poor design of displays in shops.  
‘Julia’s forever brushing against racks of clothes and they’re at the wrong height for her to see them properly,’ he says.  ‘And when it comes to paying, the counters are much too high.’  Although many shops offer portable ramps to help wheelchair users, Julia says that the last thing she wants to do is attract more attention. 
‘People already look at you when you’re in a wheelchair and smile even when they don’t know you,’ she says.   In Ben’s opinion, Local Authorities ought to have someone travel around neighbourhoods in a wheelchair to discover how difficult it is to access a normal lifestyle.    Another gripe is the position of disabled parking bays, particularly on one-way roads.  If they were available on both sides of the road, either a disabled passenger or driver could get out of a car directly onto the pavement. 
‘At our doctors’ surgery, the parking bay is on the opposite pavement of a busy one-way street,’ he says.  ‘It’s dangerous when I have to take Julia’s wheelchair out into the middle of the road to help her into it.’ 
Ben makes the point that Julia didn’t choose to suffer from a painful and debilitating illness any more than he chose to do his bit in helping her.  It was simply the luck of the draw, so why should their needs to be taken as less important than others?  Of course, he’s right. 
In addition, due to people living longer and new medical treatments, it is estimated that an additional 6,000 people become carers every day – making a total of more than 9 million carers in the UK within 20 years.  There’s a fair chance that one of them could be you.

© Judith Cameron