September 3 2015 Latest news:
Wednesday, March 26, 2014
Can you help to bring the outside world into the lives of those unable to leave their home because they are caring for a loved one? An online community for carers is appealing for help to keep its vital service open to those in genuine need. STACIA BRIGGS spoke to Chill 4 Us founder Wendy Maxwell about the importance of keeping the lines of communication open.
It’s a lifeline for the lonely, a vital online family for carers, run by carers.
But the Norfolk-based organisation, Chill 4 Us Carers - a social network community for carers and helps those who are looking after others find help – needs your help to survive: starved of funding and the laptops that are a lifeline for those who need them most, the organisation is desperate for help.
A peer support group, the non-profit organisation offers resources for carers and is an ‘online family’ for carers, offering practical advice, chat with other carers, information or a bit of fun after a day spent at home in an unpaid job which is often thankless, difficult and physically draining.
Set up in 2002, the site www.chill4us.com is run for carers by carers, all of whom work on a voluntary basis. With hundreds of members across the country, founder Wendy Maxwell, 71, is passionate about bringing the outside world to those stuck inside four walls and has campaigned tirelessly to give computers to those who can’t afford them.
For Maureen, Chill 4 Us was a light at the end of a particularly dark tunnel.
She spent 16 years as the primary carer for her daughter Louize, who sadly died last year from progressive multiple sclerosis aged just 36, and for her diabetic mother, who died in 2010. In 2011, her husband of 40 years, Derek, was diagnosed with lung cancer and had to undergo intensive treatment.
Throughout, the Chill 4 Us online forum provided Maureen with a place to visit where everyone understood what she was going through, a place to unwind and relax and a place to talk to people who were going through exactly the same trials and tribulations.
“I had three terrible Christmases in a row – in 2010 my Mum died two days before Christmas, in 2011 my husband was in hospital recovering from surgery and in 2012 Louize was in hospital and we nearly lost her on Christmas Day,” she said.
“I lost my Mum and my daughter within two years and in between my husband was ill. It was absolute hell. I don’t know how I came through it, but I do know that Chill 4 Us was part of what helped me – it’s a little bit of escapism from the world.”
Maureen is still involved with Chill 4 Us, helping Wendy with the website, and is slowly beginning to rebuild her life. Ironically, before she left work to care for her daughter, she was a carer for Social Services, now, for the first time, she is looking forward and planning a life that doesn’t revolve around care.
“People used to say things to me like ‘do you go out much in the winter?’ or ‘do you like eating out?’ or ‘do you enjoy going on holiday?’ and I’d say ‘I don’t know’, because I never had the time to do anything other than be a carer. Once that role is taken away from you, you have to find a new purpose,” she said.
“I think I would have gone crazy without Chill 4 Us – I needed it to take me away from my own reality. Even if it was hearing about someone else’s problems, they were just that – someone else’s problems. Now that I’m not in an active caring role, I hope I can help other people going through the same thing.
“And I have my first holiday since 2003 booked – a fortnight in the Isle of Wight with Derek for our Ruby Wedding anniversary. I didn’t feel I could do anything last year, but now I am trying to make a new life. These days, when I’m frustrated I take it out on the garden!”
The site has a 24-hour forum and chat room where members can post messages or reach out when they feel under pressure, there is an archive with games for members to play at all times of the day or night and issues can be discussed privately, without details being available to view online.
Wendy’s son Ross helped her set up the organisation and sister sites Computers 4 Carers www.computers4carers.co.uk and The Carer’s Newspaper www.thecarersnewspaper.co.uk which offers a free daily news and health service for carers across the UK.
In 2010, Wendy won the Daily Mirror’s East Anglia’s Digital Hero award for her endeavours, securing a £5,000 prize which has kept the website running – but the organisation desperately needs new funds and laptops for carers.
“It’s the support and encouragement from each other that keeps us all going,” said Wendy, who was a carer for ten years for her mother, who had pancreatic cancer.
When June and Barry Williams promised to love each other in sickness and health at their Pottergate wedding in 1955, they meant every word.
For seven years, Barry cared for June at home as she battled dementia, watching the wife he loved disappear before his eyes, her personality robbed by the cruellest of diseases.
June then went into residential care close to the couple’s home – Barry visited every day for three years until her death, four years ago.
For Barry, Chill 4 Us was the place he could go after he’d put his wife to bed, a place where he could talk to people who understood what it feels like to be a carer, a place to make friends and a place to find help and advice.
“I cared for June at home and it was a real struggle at times. It gradually got worse and worse and worse and in the end I was having to do absolutely everything for June, bathing her, feeding her, taking her to the toilet, dressing her, everything,” he said.
“Dementia is a terrible, terrible disease. It takes away the person you love and it’s horrible to watch.
“I did have help from my family – my sister had a care home in Holt and would come to look after June on Saturdays which was the only time I could get out of the house to do jobs and the shopping. I had no time to myself, to speak of, but I did manage to go on the Chill 4 Us forum every evening after I’d put my wife to bed.
“It was an escape for me. I made friends on the forum who I later met and talked to people all over the country. After my wife went into the care home, I would still go online every night and it was nice for me to help people in a similar situation.
“Even now, I still go on the forum and I still attend Chill 4 Us meetings and see Wendy. I also meet up with a chap I met online who comes from Northampton and who I got chatting to. I have three grown-up sons who were fantastic and helped me, but sometimes I did feel very alone. Chill 4 Us was there for me when I needed it.”
“You can become a carer in an instant and when it happens to you, you can suddenly find yourself in a very difficult situation. You’ve got someone to look after who is ill, you need to find help and yet you’re stuck in your house. That’s when the internet can make all the difference.
“When you are a carer, it can be frightening and you can feel very alone – we are the only peer support group for carers in the UK and it’s vital that people have somewhere they can go to talk to other people: they may not have the chance to speak to anyone else at all, otherwise.”
The EDP has donated five laptops to Chill 4 Us to give to carers but the organisation needs more – Wendy is asking anyone who has a working laptop which they no longer need to donate it to the organisation so they can give it to someone to whom it will be a lifeline.
She is also hoping to raise the necessary £5,000 to turn Chill 4 Us into a registered charity which would make future fundraising and grant applications far simpler and is also looking towards a time when she could hand the reins to another member to run the sites.
Charity status would mean the organisation could look to a future where a paid member of staff could run the site for a few hours every day, from home.
“I recently was unable to offer a carer the level of support I usually do because of a few of my own issues and I asked another member if they thought it was time I gave up because I couldn’t be there for people like I used to be,” Wendy said.
“She sent me such a lovely email that said: ‘You have provided a safe, secure and happy place for us all to help each other. Never, ever feel guilty. Without you, hundreds of carers wouldn’t have the support and help and the world would be a very sad place.’ I want to keep Chill 4 Us going. So many carers are so very lonely.”
If you would like to make a donation, contact Wendy through the Chill 4 Us website or on Twitter or Facebook. Laptops can be taken to the Dixons Shopping Centre on Reepham Road, call 01603 340193 for details.