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a1000shadesofhurt

a1000shadesofhurt

Tag Archives: MS

Life as a young carer

03 Sunday Feb 2013

Posted by a1000shadesofhurt in Carers

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carers, MS, young people

Life as a young carer

Ray Thomas chuckles as he recalls the sight of bread appearing to butter itself on the kitchen counter back when his daughter was at preschool. “Sarah couldn’t reach the counter to make sandwiches, so all you’d see is the bread and knife looking as though they were doing it themselves,” he says.

Sarah has been a carer for her mother, Carole, who has multiple sclerosis, since she was small. Then, when she became an adolescent and her father was diagnosed with degenerative bone disease and fibromyalgia, she had to become his carer too. “I’ve never known anything else,” says Sarah, who is now 18 and who continues to do everything from general household chores to helping with medication, providing physical assistance, filling in forms and many other day-to-day jobs.

“One of my earliest memories was being amazed to see my friend’s mum walking. I thought all mums were disabled and all dads worked long hours,” she says, as I talk to her and her parents at their terraced home in Shrewsbury. “But I can’t say I was disappointed when I found out that my mum was different,” she adds, thoughtfully. “It has meant she’s always been around and although it’s hard to say what I’d have been like if I hadn’t cared for her from a young age, I do know I’m very independent – far more so than most of my friends.”

It’s true that Sarah’s confidence, assertiveness, empathy and buoyancy all combine to make her seem much older than her teenage years, while her relationship with both parents reveals a rare mixture of easiness and frankness.

There are lots of assumptions made about young carers, says Sarah, not least that they miss out on holidays. “In fact, we usually got away three times a year. Then there’s the assumption that my education suffered. But I did well in my GCSEs and am enjoying studying health and social care at college. If anything, I hand in work early. Mum’s illness is so unpredictable that I’ve always felt I need to be ahead of the game.”

Neither Carole, 56, nor Ray, 59, feel guilty about the role Sarah has had to play. “People often ask me that,” says Carole. “But I think the illness has given us advantages as a family. Not only have she and I had much more time together than most families, but I think the illness has made me a better person for keeping life in perspective. Hopefully I’ve passed that on to her.”

Carole was only 20 when her first symptoms of MS began – notably, blurred vision and pins and needles in her legs. “It wasn’t long after we’d got married and there were days I thought I was losing my mind. One day when we came home to find the cat dead, I even got them to do an autopsy because I wondered if I’d caught something from her. So I was relieved, two-and-a-half years later, to get a diagnosis. Finally, I had a name to put to it and could get some treatment, although there wasn’t much around at that time.”

Although he didn’t explain why, a specialist told Ray and Carole he wouldn’t recommend having children, so they put any hopes of expanding their family aside until another specialist said he could see no reason not to. It was eight years before Sarah finally arrived. “Carole was the healthiest I’ve ever known her during her pregnancy and the happiest I’ve ever known her when Sarah was born because she was such a distraction from the pain,” says Ray, although it’s Sarah who appears more well-versed in the details of that period than any of them.

“I didn’t cry and they only had to wake me to feed me. If I fell asleep on the floor, Mum would just put a blanket on me as lifting was hard for her,” she says, as her parents nod in agreement. “As I entered toddlerhood, I didn’t see the point of tantrums or crying, so I continued to be no trouble. If Mum needed to rest, Dad simply took me out. Friends and relatives helped out a lot too. In fact, I loved it when Mum went into hospital because I got to have a sleepover at my friend’s house,” she says.

Sarah’s earliest duties were things such as unfolding Carole’s walking stick, lending her a shoulder to lean on to get out of a chair and basic housework. Later, she started to give her mother injections, do more housework, plan meals and check tablets, as well as help her in the shower and bathroom.

“By the time I had got to year 9, my school teacher said, ‘If you think about it, you and your mum’s roles are reversed’ and I thought, yes, I’ve never thought of it like that before, but it’s true.

“It wasn’t just the practical things – I had become an emotional support to her too. As my dad’s pain has become more constant and agonising, that’s happened with him too. It’s not something I feel remotely bitter about, but it must at least partly account for why I’m not your typical teenager and I never do stuff like drink and party hard. I’m a lone ranger and a very sensible one at that.”

Not that any of them see their situation through rose-coloured spectacles. “There are weekends when I literally cannot move and Sarah has to move my legs for me, while Ray’s pain can be unbearable, so of course it gets us down sometimes,” admits Carole.

“We can irritate each other,” says Sarah. “We don’t shout or argue, but because we’re together in this house most of the time, sometimes I don’t know how we don’t wind up killing each other.”

“I think you forget how young I am sometimes too,” she adds, addressing her parents. “I asked Mum what a word meant the other day, and she was really taken aback.”

The worst aspect of Sarah’s life has been bullying by her peers. “I’ve never yet met a young carer who hasn’t been bullied. I think it’s because we stand out – we have often had to grow up quicker than our peers, and kids don’t always like that. In my case, there was a group who targeted me physically and verbally at school.

“Sometimes even adults were unkind. I have to go to our corner shop a lot and the woman there used to eye me like a hawk and was always rude to me, as if she was expecting me to steal. I suppose it’s because I was in there so much at such a young age. Then one day I went in with my mum and the reality of my situation must have hit her because she changed her tune completely, and has been nice ever since. But even when I was asked to carry the Olympic torch this year, there were people who told me I didn’t deserve to. These days, I can rise above it, but it used to really hurt.”

Sarah’s anxiety has not been easy either. “I’ve always been a nervous person, but after my uncle died in 2006, I started to get panic attacks. He was the fun one in the family – the relative who would let me be a child, taking me to places like the cinema. But even if he hadn’t died, I suspect I’d have some kind of issue. I’ve never met any young carer who doesn’t, whether it’s extreme shyness, aggression, depression or anxiety. It has to come out somehow.”

Sarah first started meeting other young carers when she helped to set up a local group for them, when she was eight. “It became my lifeline. It was somewhere where others really got what it’s like to be a carer, and it was a safe place where we could be brutally honest about our lives around each other. Best of all, it was where we got to be children. Play was a major part of those get-togethers.”

The group also became the catalyst for Sarah’s passionate campaigning for young carers and she continues to call for better support and recognition. There are an estimated 700,000 young carers in Britain, with an average age of 12, which is how old Sarah was when she posted a video on YouTube showing what life can be like. “Local councils and the government just don’t realise how much emotionally and physically young carers go through, and I wanted to show them,” she explains.

In 2009, Sarah won the Multiple Sclerosis Society’s Carer of the Year award and the International Caregiver award from the Multiple Sclerosis International Federation in 2010. Last year, she was invited to carry an Olympic torch in recognition of her work on behalf of young carers.

Her latest bugbear has been university. She started to wonder how she would ever manage to go. So strong were her views that in 2010, she was invited to air her concerns, along with four other young carers, at a meeting with David Cameron at Downing Street. “It’s not just me – it’s thousands of young carers in the same, and a lot worse, position who just don’t have any prospects because of it,” she says.

Ray accompanied Sarah on the trip. “David Cameron said to me, ‘So how are we going to get your daughter to university?’ I answered, ‘You’re the one running the country, you tell me.’ But he didn’t.”

In the end, Sarah enrolled for a course through the Open University. “It means I can stay at home and get the degree I’ll need to hopefully go on and work in health journalism or policy-making. It suits me, if I’m honest. I get panic attacks in exam situations and I just wouldn’t enjoy sharing a house with a bunch of partying students who don’t clean the bathroom or wash up. I just know I’d get teased.”

So what does the future hold otherwise for Sarah? Actually, she is engaged to be married. “We have no imminent plans to marry but there will come a time, perhaps when I am at university, that I’ll want to move in with him – I do think I’m increasingly ready for that. Mum and Dad have always encouraged me to grow up to have my own adult life, and while I used to worry what would happen to them, I think they would manage now. They have lots of friends and relatives, and I would never be far away.”

Further information

• Up to 700,000 children in Britain look after/support to some extent parents or siblings with disabilities, mental-health problems or who misuse alcohol or substances.

• Many provide more than 20 hours of care a week, with some doing more than 50 hours a week.

• Research shows that 27% of young carers, aged 11-15, miss school or experience educational difficulties and 68% are bullied by their peers and feel isolated at school.

Support for young carers

Many parts of the country offer a Young Carers Project. These offer fun (evening clubs, days out and holidays) and a listening ear when necessary. These are also a great source of information and advice for the whole family, as well as support to help young carers make the best choices for themselves. Most are listed on the internet, or find out more by emailing youngcarers@carers.org.

• Young carers can gain help and support from a wide range of professionals, including doctors and school nurses, teachers and other school staff, social workers and youth workers.

• Carers Trust is a website and online support service, through which young carers can find others in similar situations to chat to in a supportive environment. There’s an online support team that offers email and chat sessions, and additional advice on the Agony Aunt pages. The team also runs a programme of web chats with special guests once a month. Find out more at youngcarers.net.

• The MS Society provides a guide for young carers on the resources page of its website, mssociety.org.uk. The charity also has a Young Carers Fund, which gives young people caring for someone with MS the chance to fulfil personal goals or wishes.

• Helplines, notably ChildLine, are a good source of confidential advice because you can choose not to give your name.

How One Charity Is Tackling Complex Mental Health Problems Using The Simple Power Of Reading

06 Tuesday Nov 2012

Posted by a1000shadesofhurt in Uncategorized

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books, Children, confidence, dementia, literature, mental health issues, MS, physical health, reading, relaxation, symptoms

How One Charity Is Tackling Complex Mental Health Problems Using The Simple Power Of Reading

It is, as one member of the Reader Organisation puts it to me, like watching a dozen tiny miracles.

Sat around a kitchen table in a mental health ward in central London, five patients are munching biscuits and taking turns to read out loud from Great Expectations.

We pause after the scene where Pip meets Miss Havisham sat alone in her cobwebbed bedroom.

Lucy, a London woman in her 30s who looks far older after years battling alcoholism, speaks first.

“It’s like me when I was drinking, that is” she tells the group with a nervous chuckle.

“I couldn’t let go of who I was. Couldn’t move on.”

We pick up the story again until Pip is humiliated by Estella, runs away and kicks a wall in frustration.

Ryan, a Scotsman with big, bunched shoulders says in an intense, slow voice that he felt exactly the same way as Pip that morning talking to his doctor.

“You can feel patronized at every stage in life, especially when you’ve got a mental illness,” he says.

“Doctors, people in shops, your children’s school teachers…” he flares up momentarily, getting angry as he tells the anecdote, then relaxes so we can carry on the story.

Up until this point Jan, a softly-spoken woman in her late 50s who has suffered for years with manic depression has remained politely quiet.

But at the group’s request she takes a turn to read in a beautiful, expressive voice which everyone compliments afterwards. She ends with a smile and begins happily nattering about how much she loves Dickens, before catching herself.

“I can’t believe I just started a conversation!” she says, blushing.

For ten years, the Reader Organisation has been helping some of the most vulnerable people in society feel better by carefully harnessing the power of reading.

In schools, care homes, psychiatric wards and local libraries across the UK, sessions held by one of over 40 trained facilitators provide a haven for troubled kids, elderly people battling dementia and people with a range of mental illness, from depression and schizophrenia to drug addiction.

The format of the sessions is very simple. Taking it in turns to read, the facilitator and the group work through a novel or short story, pausing at key moments to share their thoughts about the story and how it makes them feel. Then they end with a poem.

There is no attempt to ‘analyse’ the texts in any academic sense, just to empathize with the characters and debate the plotlines. But then there is no ‘dumbing down’ either – the reading list is resolutely classic, from Shakespeare to Steinbeck to Wordsworth and the Romantics.

The therapeutic benefits are two-fold. First as Jane Davis, the charity’s founder and a former literature tutor, puts it: “there is something about reading aloud, something rhythmical, comforting, childlike and secure that either directly or indirectly addresses that inner weather we all experience. That’s why people love it.”

The second, particularly for people suffering from mental health problems like those I meet in London, is the opportunity to share how they are feeling with others through a form of displacement.

The characters in Great Expectations or Shakespeare or any of the texts the Reader Organisation use function as vessels – or as Dr Kathryn Naylor, an Associate Specialist in Forensic Psychiatry at Ashworth Hospital puts it: “a way of expressing emotions without having to say what’s really upsetting you.”

Naylor treats men who are mentally disordered offenders, and has been using The Reader Organisation as a supplementary exercise with her patients (“it’s not therapy it’s therapeutic” she explains) for many years.

The results, she says, can be amazing.

“We had a man with us in his early 40s with paranoid schizophrenia, who was very suspicious of other people’s motives. He found it very hard to talk to people and had bad social anxiety.

“He started coming to the reading group and just sitting in the corner and listening. This happened for about 3 months, when eventually one day at the end of a session he suddenly said: ‘can I read the next page?’.

“We saw that as an incredible breakthrough, being able to read in front of other people. That was accompanied by him engaging in cognitive behavourial therapy, looking at some of the underlying reasons for his paranoia and mental illness.

“The group brought about real progress for him. He has since left the hospital. Prior to the group he felt he couldn’t even leave the ward.”

The Reader Organisation wasn’t founded with the aim of helping people’s mental health. Instead, it was born out of Jane’s belief that the great works of literature should be accessible to all, no matter their background.

“Books did something for me that helped me have a different kind of life to the one I was heading for,” she explains.

“I had been a 12-year-old run away. Someone who at a young age had been using drugs and drinking a lot. I was disturbed teenager who had a shoddy education, so when I got my degree and even my PHD I still very strongly had a sense of myself as not being properly educated.

To end up as a university lecturer, she says, felt amazing.

“But I couldn’t help thinking that out there in the wide world was someone like me in a bus shelter who needed to find the same things I’d found.”

After 15 years teaching the canon to bored undergraduates mainly from comfortable middle class homes at the University of Liverpool, Jane finally found an opportunity to try out her theory. In 2002, she was given a £500 budget to set up a reading scheme under the university’s new objective of ‘widening participation’. It would prove to be not just a turning point in her life, but go on to change many others.

“It was a one off, 5 week summer project. The idea was take some books I thought was great out of the university and out into places you wouldn’t expect to find a lot of readers. I recruited a lot of the people in that first group through friends who worked in community work. They weren’t very literate, so I just read to them.

“It was fantastic. It was like meeting up with people from my childhood – the ones I used to meet in the pub where I worked – but instead of serving up beer and vodka I was serving up Shakespeare. People loved it and realised that this was what I wanted to do. I did one more year at the university and kept the group up in my own time. Then I handed my notice in.”

The first few years were a struggle as Jane tried to find funding for a project that didn’t give anyone qualifications or get them into work. But it was as she gathered feedback from participants that Jane realised the true potential of her inclusive, accessible approach to sharing literature – not to educate, but to heal.

“We were frantically trying to gather evidence so that at the end of our year we could justify the project continuing. So we began asking the people attending the group: ‘what’s it done for you?’

“The responses were astonishing. People would say: ‘I’ve got MS, and when I come here for two hours a week I seem to get into such a state of relaxation I become unaware of my symptoms’, or ‘I have chronic pain but I forget about it here because I’m so immersed in the reading.’

“We knew that a number of the people attending had serious mental or physical health issues, but these were powerful and surprising moments. As well as giving people the confidence to read Shakespeare, we were making them feel better too.

“A woman said: ‘I’m bipolar and I’ve been bipolar for 30 years and I’ve tried everything to get better, but this is brilliant. It should be available on the NHS.’”

These early responses would send Davis’ project on a whole new trajectory, and change her entire outlook on what the Reader Organisation could achieve.

“I’d never thought of it in those terms before. But if one in four of us have mental health issues, it must really be more like two in one, because they’ll be a lot of people out there like me who have had mental health problems but didn’t bother going to see a doctor about it.

“Now I don’t think of ‘healthy’ and ‘unhealthy’ as two separate states, I think they’re on a continuum. I realised that what was true for me as young adult – that I love reading because it makes me feel great – could be true for anyone with a little help.”

If this all sounds rather anecdotal, there is a weight of academic evidence to support The Reader Organisation’s claims too.

A study carried out by the University of Liverpool in 2011 looked at the long term affects of participating in Get Into Reading, The Reader Organisation’s flagship program, on older people living with dementia.

They found that regular attendance was effective at improving the memory and concentration of patients, and had a positive long term impact on reducing symptoms such as delusion, anxiety and irritability. It concluded: “the Get Into Reading model should be extended to all care homes.”

Today, the Reader Organisation has just celebrated its tenth anniversary. It now runs 100 weekly reading group in its original home of Wirral alone, and has teams set up in ten different boroughs of London and areas of South Wales, Belfast, Durham and Glasgow – as well as sister projects in Denmark and Australia.

Speaking to anyone involved, from the nurses and volunteers who facilitate the groups to the readers themselves, what comes through is the overwhelming potential everyone feels the scheme has.

“There are a lot of areas of life where what we do could work,” Jane tells me when I ask about the future.

“The army for example. Veterans. People with post-traumatic stress – why not?”

Give it another ten years, and perhaps we’ll no longer see reading as simply as a source of pleasure or a route to education but a way to tackle diseases of both the body and mind.

To learn more about The Reader Organisation check out their website.

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