Weekend visits

Bhakt had just finished watching 3 Idiots. What next? What next? Bhakt knew the bone cancer in his right leg was spreading fast. He stared at his bandaged leg and then suddenly looked up,smiled and said he could watch Spiderman 3.

“Just tell us what you want to watch and we’ll bring it for you,” said K V Hamza who works in the Finance Ministry and is general secretary of DNipCare,the Delhiites’ National Initiative in Palliative Care. “And we’ll get the laptop too,” said Ajith Kumar,a DNipCare volunteer who works with a Central government ministry.

Bhakt smiled. Standing next to Bhakt’s bed,his mother smiled,looking at her son,so full of life.

Medical care in India,and much of the world,is very rarely about comfort. It’s not often that the doctor asks a terminally ill patient how she wants to spend her last days or if the needle pricks and bed sores hurt. Palliative care and organisations like DNipCare fill in this critical vacuum in medical care — that of holding hands much after the worst has hit you.

DNipCare was the result of an idea that came up when Hamza came across a weekend feature on palliative care in the Malayala Manorama. That got him thinking and he and a few friends discussed the need to help terminally ill and bed-ridden patients. So DNipCare was set up on August 15,2008,with A T Sainudin as president and 45 volunteers. It initially came together under the banner of the Kerala Muslim Welfare Association,Delhi,but branched out “since care can’t be confined to any one community”.

Now,every weekend,volunteers of DNipCare,including some doctors and nurses,call each other and discuss where they’ll meet. If someone needs help,they drive up. They also check on patients on weekdays,after their regular office hours,like they did that Tuesday when they visited Bhakt and Christine.

Christine lives with her husband and two grown-up girls in a dreary,run-down flat in Nehru Nagar,next door to the slums of Srinivaspuri. Four years ago,Christine had a tumour removed from her spine and that left her paralysed,bitter and angry about life. Her husband had to quit his job at a printing press to look after her and the daughters quit their studies to work for meagre salaries.

The first time the DNipCare team went to her,in January this year,Christine was shivering from the cold. The one-room house was bare,except for an iron cot and Christine’s wheelchair. The visits to the doctor were stretching the family’s resources beyond anything they could afford. The volunteers got her blankets and when they realised the family had nothing to eat,they went down to get some provisions too. “Very often,these illnesses force people to cut down on their needs till they have nothing left. So we have a list of basic provisions,a monthly ration worth Rs 1,200,that we supply to people who need them desperately,” says Hamza.

So Christine’s family too got DNipCare’s ration supply for a while. “But since hers wasn’t a terminal condition,we realised that it wasn’t a good idea to have the family depend on someone all their lives,in this case us. So to help the family get on its feet,we set up a screen printing unit for Christine’s husband in the narrow verandah of their home,” says Ajith.

They also arranged for a nurse,a volunteer with DNipCare,to visit Christine every month and change her catheter. That saved them the trouble and money involved in going to the hospital every time the catheter had to be changed. And then,the doctor in the DNipCare team sat down with Catherine and explained her condition — that she would never be able to stand up again but there were so many other things she could do.

Her doctor at the “big hospital” had never told her that. All they did was put her on a wheelchair and send her home.

“Our organisation is entirely run by volunteers—we don’t have a single hired hand. So we have no overheads. Every single rupee that we spend comes from donations or voluntary spending and that is accounted for on our website,” says Hamza.

Besides patient care and rehabilitation (providing a means of livelihood like it did for Christine’s husband),DNipCare holds awareness camps and works with other organisations to mobilise palliative care through them. “Also,this year,we started an education grant called ABC for children of patients. Don’t we all buy books and uniforms for our children around this time of the year? But what about children of people who have exhausted all their means? This year,we gave Rs 22,000 to 14 families as part of this grant,” says Hamza,munching on tough,dried dates kept in a plastic box in his car. “Do you know this is an alkaline fruit? It checks acidity so on days we skip lunch during these patient visits,this keeps us going,” says Hamza.

It’s much more than this shrivelled fruit that keeps them going. “Since DNipCare is entirely run by volunteers,it needs a different kind of commitment,a different kind of zeal. If it weren’t for a few people here,the whole set up will collapse. So we need volunteers,many more of them,” says DNipCare treasurer Antony Cyriac.

To volunteer,contact KV Hamza at 9891008356