Shoma A. Chatterji says caregivers or people who tend t others suffering from various ailments are a neglected lot.
A recent programme on television was about Alzheimer’s patients and their caregivers. The patient, 65, lay on a bed with an in-built wooden bracket around it. She was conscious but had no memory or awareness about her identity. She was incurable but not terminally ill. Taking care of her was her 80+ mother because Alzheimer’s patients cannot be taken care of by professional caregivers. A close family member alone can become the caregiver. “But what if I die before she does?” the worried mother asks, hobbling across on her walking stick, bent with age, spooning a liquid into the daughter’s mouth. Is the mother still alive taking care of a daughter who is beyond all care? We do not know.
When a close family member of this writer passed away after a very painful fight with cancer, her husband appeared to be visibly relieved Mr. Mehta (name changed) said, “The last five years were terrible for me,” “There are instances when caregiving can turn into frustration and a burden,” says R. Thara, director of Scarf India. “This is more so with disorders of the mind such as schizophrenia or that of an intellectually challenged child whose every need has to be met. Chronic neurological conditions such as strokes, Alzheimer’s or Parkinsonism can also pose problems for caregivers.” Caregiving organizations are there in some parts of India but sadly, most of them are targeted atsenior citizens who cannot fend for themselves and not for younger people who have a long life before them crippled by disease and/or accident.
“When Sunita was first diagnosed with cancer, we were both shocked. The pain was more because we did not have children to share the emotional burden with. We had no idea of the stage in which the cancer was. When it was diagnosed as malignant, we were devastated. She was an extrovert, very warm and friendly while I am a known introvert not given to making friends or talking much. I could not confide in friends because I hardly had any. Her brothers came forward. For five years, my life was reduced to the waiting lounge of clinics, pathological centres, operation theatres and nursing homes. She went down slowly, crying all the time as if she had been slow-poisoned. I was almost waiting for her to die. When she passed away, I cannot tell you how much relief was mixed with the grief. I think if we had counselors to counsel caregivers of terminal patients it would have helped,” said Mr. Mehta who now works part-time in a neighbouring library and goes on long walks, runs the washing machine and watches television.
Rupesh Mukherjee’s wife is a cancer survivor. She was diagnosed early. But Mukherjee who insisted on taking care of his wife soon became a nervous wreck. “Her chemos made me feel sicker than she did. She is a beautiful woman and I could not stand her losing her lustrous hair with every chemo. She wore a wig to relieve me from my agony though it was heavy. But then, when her hair grew back and she was back home, we picked up the threads from where we had left off. In a way, her illness taught me the value she held for me but I would never exchange it for her illness which took a very heavy toll on my nervous system and my confidence,” he sums up.
These men and women suffered ‘vicarious trauma’, a term that describes the cumulative transformative effect on the helper resulting from working with survivors of traumatic life events or terminal ailments The symptoms can appear much like those of posttraumatic stress disorder (PTSD), but also encompass changes in frame of reference, identity, a sense of safety, ability to trust, self-esteem, intimacy, and a sense of control.
For younger couples where one partner is suddenly bedridden for an