The assumption is love. We assume that parents love their children, that children love their parents and that siblings love each other. We assume that the bedrock of the family is love, and this is so often the case that we find departures from the norm shocking, even horrifying. But illness can strain the bonds of family simply because so much changes when a person is ill, especially when the illness is set to last for a long time.

A caregiver is a paid or unpaid person who helps someone who is ill with the activities of daily living. Ashla Rani, a techie who suffered a train accident that confined her to a wheelchair and is now a trustee of Pallium India, remembers that when she arrived at Pallium for the first time, she was impressed by the fact that they were also interested in how her mother was handling the situation: “My mother was caring for me, cleaning me, bathing me, feeding me. When we came here, she was asked: ‘What is your name? How did you come to care for her? How do you feel about this?’ When she told them about her chronic backache, they asked: ‘Will you be able to do this by yourself? Do you need help?’ I learned so much from that and I use it in my work here, to keep patients front and centre,” Ashla says.

I am reminded of this on a visit to Golden Butterflies, Chennai. The NGO reaches out to all children with life-limiting or life-threatening illnesses.

“But reaching out to a child means reaching out to the parents, and that means reaching out to the family,” says the founder, Stella Matthew. I see what she means when we set off on a home visit with Sister Saranya and Ramalakshmi who heads the projects team. Dr Sabitha, a volunteer, joins us later.

Saif is 14 years old and weighs 13 kilos, a frail form in a blue T-shirt and a diaper. He is asleep when we arrive but his mother, Safina, is welcoming and calm. Golden Butterflies has been in touch with her for a while now; Ramalakshmi and Sister Saranya are now familiar fixtures.

“He was a normal child for the first year and a half,” Safina says. “He sat up, he was saying a few words. Then he had an operation for hernia and the trouble started.” Saif was diagnosed as having Hunter’s disease, a rare condition that affects one in 1,00,000 to 1,50,000 male births.

“I was pregnant with another child when the doctors told me what my son was suffering from and that it would affect his siblings as well,” Safina says. She is a calm and confident woman with a degree in English literature. “I would have thought twice about another child, had I known.”

Saif’s brother shows signs of Hunter’s too, but his is a variant that makes him hyperactive, violent and in need of mood control so that he may attend a special school for the deaf. (Hunter’s disease affects hearing too.)

Saif has a severe variation. On the last visit, he had a Ryle’s tube inserted to feed him. This visit is to check on the tube. Dr Sabitha turns up and the examination begins.

Saif sleeps through it all.

“It has been a long journey,” sighs Safina as Dr Sabitha and Sister Saranya give her boy a gentle going over. They are both pleased to note how well he is being taken care of. There are no bedsores, his teeth are free of caries, his skin is clear. Safina is clearly on top of this, but she admits to having moments when she needs counselling.

“This is the month of Ramzan,” she says. “So, I have inner peace. But when it is over, I will need to talk to you.”

Ramalakshmi nods understandingly. And suddenly I see the privations of Ramzan in a new light; they are not an imposition on the faithful, they are a source of strength.

“You are managing very well,” says Dr Sabitha, and Safina sighs. Later, I am told that she does the heavy lifting of looking after her two sons, but her husband is by her side. This is so often not the case that I am relieved. Because two are always better than one.

A human being who is ill just wants to go home to the familiar and the comfortable. Palliative care now works to make sure this is possible in as many cases as possible, hence the emphasis on home care and home visits. But this means that there must be someone who is willing to take over the work. Some families can afford paid help in the form of a nurse or a caretaker, but this is expensive. Many families must learn to take care of the day-to-day operations: cleaning a wound and making sure a tube is not clogged. To this end, training is essential, and the palliative care team must work as if it is making the family and the caregiver an extension of itself.

Technology can help. Dr Veronique Dinand of Wadia Hospital, Mumbai, says: “One of the good things about COVID-19 was that it made Zoom and other platforms popular. We use Zoom to teach patients self-care, to train parents and caregivers for things like how to manage breathlessness using simple exercises, and to train parents in skills like providing gentle physical therapy or positioning a bedridden child to prevent bedsores.”

Excerpted with permission from A Good Life: The Power of Palliative Care, Jerry Pinto, Juggernaut.