My friend’s father (let’s call them Vani and Amar babu) had lived a full life. He had worked and earned well, saving enough to live in comfortable retirement. Then as his children got married and built their own lives, he and his wife, to whom he was very devoted, built a second life of their own. He died recently at the ripe old age of 89, his wife having preceded him over a year ago. Till the end, he had enough money to take care of medical expenses and at least one of his children to take care of him.
This should be as happy an ending to a life as one can hope for. But it is a month now since he passed away and Vani, who looked after Amar babu the past year, is emotionally severely traumatised and says she needs to go away for some time to some place by herself, for special peace to get back her stability. She had done everything possible to look after her father but is wracked by a sense of severe inadequacy.
From a little before her mother died, her father began showing signs of dementia. Then when he became single, the children clearly saw he could not live by himself and started to look for an old people’s home. That proved to be a fruitless search, with one very pleasing facility near Kolkata, which costs a sizeable sum, taking and returning the booking amount at the last moment. They apparently took in old people who were still up and about and looked after them till the end but not those who were already helpless, and particularly not cases of progressive dementia.
Vani brought her father to Bangalore and the year to his death was one long agony. He would aimlessly walk out of the apartment when the front door happened to be open and the fact that they were a gated community saved him from being totally lost on the streets and the family not knowing where to look for him. Over the months, he suffered what was later diagnosed as a series of silent strokes that rapidly reduced his mobility. Complications grew by the day. For example, he would neither take out his dentures nor allow anyone to help him take them out. Vani dreaded the day soon when his mouth would be full of ulcers.
Right from Amar babu’s arrival, Vani had engaged the services of a full-time attendant but as her father’s condition deteriorated, it became increasingly difficult to find and retain a competent attendant. And one was needed all the time. Now virtually bed ridden, he had to be regularly turned around on the bed to avoid the onset of bedsores, and Vani, quite petite, simply couldn’t singlehandedly handle her father who was a tall and big man. Her husband was out at work most of the time and her grownup son was pursuing his career in Mumbai. Vani, who was a strong prop in her husband’s professional education venture, saw her own professional life and the fulfilment it brought her dwindle.
Finally, when getting a good attendant became nearly impossible, she and her husband located what looked like a good old people’s home, paid up and transferred Amar babu there. Then began her last month of trauma. The home was not what it was cracked up to be, in two weeks her father got bedsores and finally he went into a kind of coma. She got him admitted to a well-known non-profit hospital where he was taken straight into intensive care and in a day, the doctors said they have to put him on ventilator but it’ll only extend his pain. Then, with her consent, they allowed him to breathe his last.
I have long felt that we all have the right and the freedom to decide how we will live our last days. Those who want to do it the conventional way — medical help all along, family care or old people’s home till the end and letting life and medical science take their course — are welcome to their choice. But I am convinced that I will only live as long as I can do so with dignity, consciousness and without undue pain. I want to leave written instructions that when the road ahead of me is only pain, financial ruin for my family and a vegetative or near vegetative existence for me, I want to go in for euthanasia and want the help of doctors who will assist in my mercy killing. The key issue is that when I am on my last legs, I may be in no position to think and ask the doctor to please pull out the plug. That is where my written instructions, penned long ago when I am fit in mind and body, should be critical. I know that the law does not allow this. But we make our own laws and there should be a public debate and campaign to legalise the right to die with dignity and with proper help.
The issue has come to the fore in Britain recently where a mother, Frances Inglis, has been jailed for life for taking the life of her 22-year-old son Tom, who had become brain-damaged after an accident. She, a nurse, could not bear to see his pain with no chance of recovery and so gave him a lethal dose. The law of the land does not allow it and so, despite what many consider her heroic courage, she is in jail, having gone there with her eyes wide open.