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Caring under pressure

The mentally disabled require much care and patience. But many are not aware of the price extracted from the caregivers. A first-person account on the occasion of World Disability Day on December 3.

Primary caregivers ... under tremendous stress.

DECEMBER 3, 2002, will be "celebrated" as World Disability Day. Individuals, families, NGOs and health care professionals will celebrate their achievements, while governments will take credit for how far we have come in these areas. Indeed, we have progressed tremendously. Polio is almost eradicated by the systematic attack of the pulse programme.

But this article is about mentally ill people and their primary caregivers. I would like to pay a personal tribute to my caregiver(s) and also try to bring about some awareness about this group of people — the caregivers of the (seriously) mentally ill.

It was a moment of triumph in December 1995 when, thanks to the ceaseless efforts of psychiatrists, social workers and psychosocial rehabilitators, mentally ill people were also brought under the purview of the "Disability Act". This means that, at least on paper, mental disability can be treated on par with physical disability.

People like me, who suffer from mental illnesses and yet are normal (between episodes) enough to appreciate this statement, read this and laugh at the irony. Why? I have gone through many applications and job advertisements and found a few where they are reservations for the physically disabled. The mentally ill are conveniently pushed to the background.

Some, like myself, who have been very fortunate in getting not only very good treatment but excellent familial support, have succeeded beyond their wildest dreams — their one regret being that they cannot "come out of the closet" as they feel the society is not ready for it.

There is one important caveat here — daily medications are vital. This is where the caregiver comes in. It's his or her job to ensure that the doctor's orders are strictly followed and also tell the psychiatrist of any behavioural changes in the "patient". This ensures that the dosages may be titrated properly. It is a thankless job because the person does not win any popularity contest for extra doses of the "bitter pills". Yet, even the slightest reduction could precipitate a crisis. But close relatives somehow manage this cheerfully but are often under pressure because they cannot afford to make the slightest mistake. These are the lucky few whose charges take medication.

As for the stressful life of caregivers whose wards refuse to take medication, what happens to them? I know of a case in a housing complex where the people lived in harmony. Unfortunately, one of the residents was mentally ill but was not being treated. I could empathise with the family and felt hurt that the others didn't seem to be able to. But, I digress.

Probably because of the constant stress of living with a mentally ill person, the caregiver began to show signs of cracking under the strain. He was always angry, distrustful and became an unpleasant man. I was very sorry for him, but what could I do? I felt sorry for the people in the complex too, because, the caregiver did not "come clean" and seek their help in getting treatment for his wife. So the saga continues and the battle royal rages. I am spared no details of these incidents and I weep inside.

Why? This, after all, is the difference between physical and mental disability. Both, to use a simple analogy, are like fractures, one of the body and the other of the mind. The former is transparent, evokes sympathy and even support for the caregiver, the other at best avoids ridicule and at worst rots in an Erwadi-like situation.

It's the primary caregivers who, with their patience, understanding, empathy and above all deep caring, keep the patient going. But at what cost? Are they aware of the toll it takes on them, especially if they have no support mechanism? Do we have support groups where they can discuss the stress they are under with people who will understand?

According to a psychiatrist, if the caregiver is pre-disposed to any medical condition this stress will aggravate it. So, on this disability day let me pay my humble tribute to these unsung heroes who enable their disabled charges to rise to their fullest potential, perhaps at great personal sacrifice.


The author is a freelance writer based in Bangalore.

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