A harrowing scream greeted us as we walked into the Advantage Elder Care home in Kothanur. It came from an old woman completely bent over with arthritis, whose closest companion is utter agony. She can barely turn her head to face us as we say hello. On the one other bed in the room is another old woman, who smiles cheerfully as we enter, extending her hand in greeting. She introduces herself very politely and then says, “Nobody wants me, I know that,” before breaking into sobs. This lady has dementia. Her speech might sound grown up, but in most other ways, she knows less than a child of four.
With Shaji Philip leading the way through Advantage Elder Care, a home for rehabilitation and palliative care, the lives of the 30 other patients at the centre slowly come to light. Many of the people here are affected by dementia, crippling arthritis, cancer, paraplegia, Parkinson’s disease and even muscular dystrophy, a rare group of muscle diseases that weakens the musculoskeletal system and can bring all locomotion to a complete halt. Some patients are still left with the presence of mind to recognise a newcomer and sit up to say hello, others continue sleeping, unaware that anything has happened at all, while others just stare blankly ahead, as if there is nothing left to be said any more.
Though they lead a pitiful existence, they are still fortunate in having someone take care of them. Most are incapable of performing even the simplest activities on their own, need adult diapers, catheters and nasogastric incubation (for long-term feeding through the nose, the throat and into the stomach).
“All the patients here require constant monitoring, feeding happens every two hours. The catheter has to be changed every 15 days, and physiotherapy is given every day,” says Philip, who, having worked in the hospital industry for nine years, realised the urgent need for good geriatric and palliative care.
“Bed sores need to be treated, they can take up to seven months to heal, and nursing care is of the utmost importance,” he says. At the AEC, each patient has an attendant who never leaves his or her side, along with full time physiotherapy to help rehabilitate patients with arthritis and Parkinson’s disease. Young girls from the rural parts of Karnataka such as Raichur, Gulbarga and Hubli, most of them between 18 and 25, are given a year’s free training in nursing before they begin work at the centre. Their job can be traumatic, both because of the kinds of chores they perform and because of the psychological ordeal of staring death in the face.
“We have about two deaths a week on an average,” says Philip. In a bid to keep his employees in good spirits and help them remain optimistic through the suffering they are witness to, Philip takes them on excursions and short holidays to cheer them up. In one room lies a woman who doesn’t speak at all. There is much anger in her eyes, even though she refuses to look our way. Six months into her marriage, she suffered a severe brain haemorrhage and has been at the centre since. “Her husband comes in once in a way to make a payment. He came this morning, but he didn’t bother to go up and see his wife,” says Philip. “He argues that they were only married six months, not long enough to warrant a commitment.”
The young woman’s parents won’t have anything to do with her either because she is a married woman and no longer their responsibility. So she lies there, alone, with no hope of recovery and no real prospect of death. She is just skin and bones and furious at the raw deal life has dealt her. A young paraplegic has occupied his bed at the AEC for four years, from the age of 26, when he met with a serious accident. “Watching his parents come and go is the hardest part; they take it in turns each day,” says Philip. The young boy cannot even swallow his food, feeding him takes a good three hours each time, Philip explains.
As far as care-giving goes, AEC makes sure that no holds are barred. The patients have the best diet, including milk and fruit on a daily basis. “I want biscuits,” said one very old lady, completely beaten down by dementia. The biscuit is produced at once and she pushes it into her mouth eagerly. At that moment, all was well with the world. Despite the countless complications, life can become as simple as that.
The most frightening part is that many of these people — doctors, engineers, nurses, journalists, an author and even a bureaucrat who was defeated by drugs and suffers from dementia now — once led an active, normal life. Today they lie on those beds, completely helpless. There is not an inkling of the success they once knew. “Philanthropy is what this field needs,” says Philip. “People need to reach out and help because there are many, many people out there who cannot afford care like this, but deserve it all the same.”
Geriatric care should be a growing area of health care as the population greys at a faster rate. Yet, in India, there are very few places like AEC that give people unable to look after themselves, the level of care they need. If these people could speak, they would all be storytellers, telling the same sad story in a hundred different ways. Life is a terribly lonely experience once the illusion is gone. Nothing remains now, not success, not power, not relationships. They have only themselves to live with.