Subir Roy: The end, in twilight

The paterfamilias in one branch of our extended family recently passed away at 92. He was a legend to the family and, in particular, his many younger siblings. After quickly establishing himself, even while their father was around he took over the task of helping them get ahead in life without a single one being left behind.

He was so respected and adored not just by his siblings but also the next generation that whenever anyone needed advice he would automatically turn to the in-house elder statesman who, in turn, would not just impart advice but also support the person in whichever way needed. He rose to a very senior position as head of the legal department and company secretary in what was then a leading British firm and post-retirement was part of the faculty of several professional institutes.

But for someone who was so helpful to all around him, fate could not have been more unkind. The last several years of his life were trampled upon by creeping Alzheimer's. At times, family members, who otherwise adored him, were hard put to cope with him and continue to treat him with the respect that he had always commanded. And finally, when the end came, I have no doubt that all those close to him breathed a collective sigh of relief.

As his mind deteriorated but his body remained relatively better off, visiting him became an increasingly daunting task. After every such visit, I would return convinced that this was no way to end one's life, particularly when for the most part it had been so constructive and helpful to all around.

The old gentleman was lucky that even as the joint-family system dies, his was there to see him through to the end. But for most that is no longer the case. The last days of Indian middle-class parents, even for those with mental faculties intact, has become increasingly daunting, with children pursuing their own lives elsewhere, often across the seas.

While the aged living by themselves is a typical developed-society phenomenon, India is in limbo in the sense that the joint family is gone before institutional care and state support, well established in developed societies, has arrived.

Private institutional care, for those who can afford it, is already on the way, but going by the way in which private hospitals are run, with the sole focus on maximising billing and indifferent nursing under a veneer of professionalism, there is a gap that needs to be acknowledged before it can be filled. Homes for the aged, run by religious orders, are only a little, but not much better, in terms of commitment. In this bleak scenario, only a few non-governmental organisation (NGO)-run palliative care units stand out.

If India is to be a caring society, then it is civil society that has to step in to fill the institutional gap in looking after the aged. And in going down this road, it can learn from the way in which developed societies have ordered themselves.

One of the most heart-aching and -warming stories I have read is by Janet Steen, a writer, in The New York Times, of how she and her siblings looked after her aging Alzheimer's-afflicted mother, a professional violinist who had played for the Pittsburgh Symphony Orchestra in her time. They were supremely lucky to have come across Ramona, a middle-aged Jamaican lady with her own support system of children, grandchildren and nephews.

They moved their mother in with Ramona and there is no question that her last six months were infinitely superior to what they would have been had she been put into a nursing home paid for by the state through Medicare. It was the best combination that could have happened - a bit of social security support along with being able to find a surrogate quintessential joint family (Ramona's family helped her look after the old lady).

All this brings me to the related question of how we, as individuals, wish to end out lives. In India, the legal system allows only passive euthanasia - withdrawing support. It is not legally permissible for medical assistance to be given to a person who sees only a life of acute pain ahead and wants medical help to die. What is most important is to have a system of "living wills" whereby a person still very much in command of his senses decrees what should be done to him under certain conditions, say, when he is incurably ill but not in his senses to take a decision on his future.

While this can take care of many who do not want to prolong their useless and incurably painful lives, there still remains the need for a society to have a core of compassionate people who can nurse and take care of old people as a calling for a modest income. On this base can be built a superstructure of institutions run by NGOs to take civilised care of the aged. Right now, by this token, India is not so civilised.

subirkroy@gmail.com