Life is good now. I can see a way forward…

Sitting in her parents’ house in a small village in rural Karnataka, South India, Vidya looks a picture of confidence and happiness as she cradles her 3 year old son Rohit and shows samples of her embroidery.

However, only a few months ago, Vidya’s life was very different – to put it in her own words, “All I could see was tears…”

Since Rohit was diagnosed with cerebral palsy at the age of 6 months, Vidya has cared for him single handed, coping with his frequent illnesses and all the other challenges involved in looking after a severely disabled child. Unable to go out to work because of the extent of Rohit’s care needs, Vidya returned to live with her parents and had to rely on them for financial support.

But life began to change for Rohit when Vidya heard about the Early Intervention Centre run by a local NGO called Samuha. Here, Rohit could access the therapy needed to help his development and Vidya was taught how to carry out exercises and activities with him at home. However, apart from her visits to the Centre, Vidya remained isolated and withdrawn, unable to leave her son with anyone else.

Confined within the house for much of the time, Vidya turned to artwork and embroidery. She began producing pictures, wall hangings, table mats and door curtains, each of them drawn and sewn by hand. When Anil Patil of Carers Worldwide visited her, he was struck by her talent and the uniqueness of the products she was making. He urged Vidya to consider turning her skills into an income, but as an individual with no access to a market, this would be impossible for her. This is where Carers Worldwide was able to step in. Working through the local staff of Samuha, they were able to identify an outlet for her work, ensuring that Vidya received a fair payment for any items sold. This supplemented her income and ensured she could now take care of Rohit’s doctors bills.

However, Vidya remained isolated and she worried a lot about the future for her and Rohit. Carers Worldwide helped the Samuha staff to set up support groups for local carers and give them access to a professional counsellor. Vidya started to attend the carers group, where she was able to share her worries and practical day to day problems, and receive reassurance and support from others in a similar position. This has given her strength to face her situation and she now has a group of friends to call on when life is getting her down.

Joining the group and being helped by Carers Worldwide and NBJK has changed my life. Now I can earn money to support my family and still look after my father. My whole world has changed and life has begun again.

20 year old Sarita lives in a small village in the northern Indian state of Jharkhand. Her mother died when Sarita was 10 and she now lives with her father, younger sister and brother. Sarita’s father has schizophrenia and Sarita is his only carer. Her father cannot work, he is often unwell and sometimes violent. Sarita bears all the responsibilities of providing for the family on her young shoulders and worries for the future.

When Anil from Carers Worldwide met Sarita, she explained to him how she desperately wanted to complete her education and find a good job to support the family that she loves, but could not leave her father to go and attend her studies. She worried constantly about money and anxiety was damaging her own health.

With support from Carers Worldwide and the staff of NBJK, our partner organisation, Sarita was able to join a local carers group that they had recently set up. Here, she was able to meet with others facing similar situations to her own, discuss her problems and start to think of solutions. The carers she has met through the group have become Sarita’s friends and they meet regularly for mutual support.

Having a little time away from caring for her father has given Sarita the chance to plan for their future. Until her father becomes more medically stable, Sarita still needs to stay close to home but she has decided to use her skills to set up a small tuition centre for 15 local children. She can run this in conjunction with her caring responsibilities and it brings in a steady income. She has also been given a small loan and training to set up a home based business stitching school uniforms. When her siblings come home from school in the evening, Sarita goes to college for a few hours to continue her studies.

One small candle can light up many other candles

During the first year of the Commonwealth Foundation funded carers project, SACRED staff have formed the Sirivennela carers group in Chakralla village. The groups has 10 members (8 female and 2 male), all of whom care full time for a relative with a physical or learning disability.

When staff first approached the carers about forming a group, they did not understand the need for a group, expressing the opinion that caring was their duty and they should bear the burdens associated with those caring responsibilities. However, as staff continued to meet with the carers and also give them the opportunity to meet carers in groups already formed, they gradually realised that being part of a group could bring benefits to their health, wellbeing, economic status and inclusion in the community. In turn, this would enable them to care better and improve the prospects for their disabled relatives and other family members. They understood that by joining together, they would have a voice, a platform to express their needs as carers and to mobilise support from the community and local government.

Over the past year, the group has gone from strength to strength and is now one of the most active in the area. As well as emotional support and learning from each other, the 10 carers have accessed medical support and counselling, identified other family members and neighbours who can ease the burden of care from time to time and initiated new livelihoods – one carer has started rearing chickens and two have set up small corner shops from their houses. Two carers have benefited from the government’s toilet construction scheme, a huge practical and health support to them and their disabled relatives. The group has identified two representatives who will attend cluster level training and represent the group within the Carers Association when it forms next year.

When staff visited the group recently, one carer told them, “The carers group is a safe space for me. Previously, I was lonely and isolated. Now I have the chance to discuss my personal problems with people who really understand. It is unique and totally different to other community groups.” She added, “We are one group, on one path, moving towards our own development.”

Life is hard, my problems are still there, but now I have a group of friends and have gained a lot of confidence. The carers’ project has thrown me a lifeline and I can face my future.

Life is hard for Rashida. Her husband died three years ago, leaving her to raise their three children single handed. This would be a challenge for anyone. But for 30 year old Rashida, it is even harder because her two sons and her daughter all have muscular dystrophy. A condition which usually only affects boys (her daughter, aged 13, is one of the few girls unfortunate enough to have the physical symptoms of this genetic disorder) muscular dystrophy causes muscle weakness and is degenerative. All three children are now confined to wheelchairs. Rashida alone cares for them, day in, day out. Imagine having no time off to get to the shops, visit a friend or go to work?

Unable to see a way through and unsupported by family or friends, Rashida tried to end her life on three occasions. Then a year ago, she heard about SAMUHA, a local NGO offering services for disabled adults and children. Plucking up courage to visit their intervention centre, she learnt physiotherapy exercises to ease the pain in her children’s legs and for the first time met other parents of disabled children.

Staff also invited her to join a newly established carers group, set up with support from Carers Worldwide and the Commonwealth Foundation. At last she could share her story, her fears and her hopes with others who really understood what she was going through.

Rashida now attends the group meetings regularly. Her children enjoy meeting other children while Rashida has the chance to discuss her problems and explore solutions to them. Every month she meets a counsellor who gives her time and space to voice her deepest concerns. She has been given a sewing machine through a local NGO scheme and attended a course to update her tailoring skills. Making clothes for local women provides her with a small but steady income, which she supplements by making paper bags to supply to local shops. She can do this at home, thus combining employment with her caring responsibilities. Her children have been integrated back into school, which also allows her extra time to earn the money she needs to support them.

SAMUHA staff working on the carers’ project also supported Rashida to access the Swatch Bharath government scheme, which provides toilets in houses which do not have toilet facilities. Previously, Rashida had to carry all three children outside away from the village and use waste ground, a huge burden for her and a cause of indignity for the children.

A year on, Rashida still cares single handedly for her three children and their needs have not diminished.

With your help we can reach more carers like Rashida.

A role model for other carers

Phulu, aged 35, cares full time for her husband who has epilepsy. Together they have 4 children. A year ago, staff of our project partner, LEADS Nepal, encouraged her to join her village’s self help group. She attended poultry rearing training organised by Carers Worldwide and in March we gave her 250 chicks and financial support to adapt an existing outhouse into a poultry shed. Within two months, she planned to sell the chicks, use the money earned for essential household costs and reinvest the remaining money into a new batch of chicks. “This has given me confidence. I can earn money to support my family and buy my husband’s medicine,” said Phulu when we met her. “My husband can also assist me in looking after the chickens, which is a therapy for him.”

Sadly, the huge earthquake that rocked Nepal on 25th April hit Phulu village. She lost all her chicks. The shed was destroyed. She also lost food grains, rice and other household supplies she had stored.

Carers Worldwide provided Phulu and her family with emergency food and shelter. We are now helping her to re-establish her chicken rearing business.

Project staff comment that Phulu has become a role model for other carers in the village: “They see what she has achieved and want to be able to achieve the same for their own families.”

With your help we can reach more carers like Phulu.