April 15, 2012

INDIA: A fragile India, handled with care

MUMBAI, Maharashtra / Daily News & Analysis / Lifestyle / April 15, 2012

By Shreevatsa Nevatia

Shraddha Bhargava/DNA



Not everyone is fortunate enough to be cared for, and not everyone witnesses the manifestations of this truth quite as often as Mona Mishra. Mishra is an administrative officer with Silver Innings, an initiative to help improve the lives of senior citizens by providing care and advocacy, by facilitating workshops and through services such as dementia management. Mishra also works as a counsellor in the organisation, and in some cases, a care-giver.

For reasons of confidentiality, she chooses not to disclose the name of a successful writer who has now settled in the West, but starts by talking about his mother who had been diagnosed with Alzheimer’s a few years ago. “When I went in, all I found was a woman with a single question — ‘I had spent most of my life looking after him, where is he when I need him most?’ For four months, we just made either eye or hand contact, and then came a day when I had to perform an enema on her. She was embarrassed, but that broke the ice.” In the years that have followed, Mishra’s relationship with the 80-year-old have deepened to an extent that she is keenly aware of its implications.

“There are, of course, times when she considers me to be a substitute for her son.” And then with a wide grin, she adds, “Do you know what makes me really happy though? Taking this lady from her old-age home to a beauty parlour. You should see her face after a manicure and pedicure. It’s priceless.”

There have been times when Mishra has said ‘enough’. She remembers calling a son after his mother had passed away, asking if he’d return for her last rites. “He asked me to do the needful and inform him of the expenses. I came very close to depression around then.” Unlike much of the West, where the social services are now an accepted interventionist tool and where carers are a professionalised workforce unto themselves, the issues surrounding care, more specifically care-givers in India, are little known.
Mishra talks about the different roles she has to play in her varied capacities. “The senior citizens who I meet ... I have to mail their children every week. In some cases, its emotional support that I need to provide, but in other cases its things like looking after diet charts and hygiene. And when I goto the slums, it’s even more basic ... getting them to use toothpaste and getting them to keep their homes clean.”
NOW ON LIFE SUPPORT
It is perhaps difficult to find a better representation of care being administered amongst the disadvantaged than in the offices of Jeevan Aadhar Seva Sanstha (JASS) in Khar. The organisation works with the destitute and the homeless in Mumbai. Sandip P Purab, JASS’ secretary, says, “We started with wanting to care for those who were in desperate need of life support. We find people on the streets, bathe them, take them to a hospital, and rehabilitate them.
” Working on the street, adds Purab, is not that easy a task. “You don’t get that much support from the police and you get no support from the people.” With this, Purab begins to play some video clips of the work JASS has done. He can be seen hunched over a man’s leg on a pavement, cleaning an open gash of a wound swarmed with maggots. The question seems obvious. What compels him to do what he does? “Just want to sleep well at night,” he quips.
The JASS office is a rented mezzanine with a tin roof. On the other side of green curtains are three beds that together double as a makeshift ward. Michael D’Souza is 65, and was between drug habits when he ended up near Victoria Terminus. After being brought in by JASS and nursed back to health, he says, “I survived.
That’s why this institution works.” Ever since JASS was founded in 2007, it has largely been provided for by the fund-raising capacities of Sandip Purab. “We never went to the government,” he says. But Purab does confess that models of self-sufficiency do come with their limitations and that he himself has had to feel the pinch.
DOING IT RIGHT
Dr Leena Gangolli, a family physician and a public health consultant, has found herself associated with varied aspects of care. First through home and health care for the elderly, and then with projects that deal with palliative care, situations where patients and their families have to cope with the ramifications of a life-limiting diagnosis.
Making the case that the government’s responsibility must exceed beyond its budgetary allocations and extend to providing palliative care for children and the youth, she refers to the Constitution and points to the safeguarded rights to equality (article 14) and life (article 21). She says,"The government needs to understand that unlike building infrastructure like highways and sea-links which require raw materials and equipment, delivery of care requires people as the main raw material. Human resource is our biggest advantage ... there is no dearth of people in India who could be trained to deliver such care."
A need for a greater strengthening of care in the palliative sector was also reiterated at the Tata Memorial Centre, where associate professor Dr Manjiri Dighe works in the Department of Palliative Medicine. According to her, “There is a large demand coming from the families of patients who are dying, and from doctors like oncologists. But have a look at the number of specialised physicians in the state. There are maybe 10 or 15, just these small islands of care. And that is far from optimal. Far from what you’d get to see in places like the UK.”
A LEAP OF FAITH
Most of the patients that come to the Tata Memorial are impoverished. Fifty-year-old Priya Ubale is a housekeeper and waste activist who has now been volunteering with the hospital for the last four years. After all this time, she says, “You stop believing in God when you begin to realise that the blight isn’t cancer, it’s poverty.” Questions of faith often surface at the Bhakti Vedanta hospital, where Dr Vineeta Sharma has been part of the Department of Palliative Care since 2008.
Though the hospital was formed and runs on the principles of the Krishna-worshipping ISCKON community, religiosity is never an essential component of care, informs Dr Sharma. She says, “It is patient-oriented. There are those who don’t want to talk about God. Then there are those who do.” Narayan Shetty, 75, seems to belong to the latter category. Suffering from liver cancer, he says he only feels fear when the pain in his body becomes 
excessive. It is at points like those, he says, while pointing to devotional literature he has borrowed from Dr Sharma, “do the doctor and these books help in forgetting.”
Niranjan Parikh and Narayan Shetty are both of the same age. For a large part of the last twenty-five years, however, Parikh has dedicated an early retirement to working with children, cancer patients, those with brain tumours and those in need of palliative care. There are several stories that the counsellor at Tata Memorial can recount. A girl being as dismissive of an amputation as she would have been of a lost plaything. A terminally ill teenager drawing a girl with a balloon and writing ‘life is an ice-cream’ below it. Doesn’t any of this rattle Parikh himself into feeling a certain fear? He comes closer and says, “Not for a minute. It is absolutely inevitable. What will I tell the people I counsel, if I’m scared of death myself.” If there’s one thing that Parikh says he wants to prove about care-giving in India, it’s simply this — “it’s never too late to start”.
©2012 Diligent Media Corporation Ltd.
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