In some parts of India, the lack of information available to families and communities about the disease their loved ones are dying from means that people often act out of fear and ignorance.
It is common for families to leave their loved ones to die alone and for people to cross a road to avoid getting too close to someone with a disease in case they 'catch' it.
Sadly, those close to the end of their life will often hide away at home and not seek treatment, because of the shame attached to their disease and the concern that their illness will affect their children’s marriage prospects.
Less than one per cent of people in India has access to palliative care but CHETNA, a community health and development project that serves 200 villages in a poor, rural state of south Asia, is focusing on educating families about palliative care issues.
As CHETNA workers meet with village leaders and families to discuss non-communicable diseases, people have been strengthened by the knowledge Jesus would receive them when they die if they put their faith in him.
Dealing with death in Ruksana’s family has been a very different experience, thanks to CHETNA.
Ruksana’s family was first introduced to CHETNA 16 years ago when her mother enrolled in one of the first adult literacy groups. Once she finished that, she was accepted as a student in one of the first income generation projects run by CHETNA – a sewing class.
Her mother died before completing the course and Ruksana was invited to take her place. Ruksana then had the opportunity to complete the literacy programme and the sewing class.
When her father found out he was terminally ill, he determined he would arrange her marriage as there would be nobody to take care of her. At the age of just 12, Ruksana was married and, shortly after, her father died.
The skills she learned allowed Ruksana to earn a small income to help support herself, her husband and, later, her children. She never took for granted the skills she had been taught, deciding that she would teach other girls what she had learnt.
Ruksana’s journey with CHETNA continued after her uncle was diagnosed with mouth cancer, the most common form of cancer in India.
Ruksana and her husband do what they can to care for her uncle in his sickness, supported by CHETNA staff who give them skills and encouragement in providing end-of-life care. Ruksana is forever grateful for the gift of love given to her by her aunt and uncle, who cared for her after the death of her parents. She has also vowed to take care of her aunt after her uncle's death.
CHETNA’s long involvement in lives and communities like Ruksana’s gives them the connection, trust, and compassion needed to enter the grief, loss, and stigma that surround death in the communities they serve.
Photo: Chris Gersch