Caregivers face multiple challenges, including the danger of themselves getting affected by the illness
Three-year-old Vaasu had not begun to speak and always seemed lost. His mother, Neha, found it difficult to come to terms with the fact that her son was not able to relate to her or understand the mother-son relationship.
He might just be a late talker, family members assured her. She, too, thought so till, one day, his playschool teacher suggested she take Vaasu to a speech therapist. Neha, however, had this gnawing fear there could be more to Vaasu's problem than his inability to speak. She recalled how he could never explain pain to her. His teacher had once told Neha that she had to slap him to control his hyperactive behaviour. Vaasu, however, had never spoken to Neha about it.
Neha consulted child psychiatrist Dr Aruna Broota, who referred her to Dr Pooja Shivam Jaitely of Moolchand Medcity, Delhi. After assessing his IQ, Shivam revealed that Vaasu was autistic. "He doesn't know you are his mother; he doesn’t even know his name is Vaasu," she told Neha.
Shivam suggested Neha call Vaasu by his name and not gestures. "I called him again and again by his name and nick name, but he did not respond. He did not even look at me once," recalls Neha. She was not yet ready to accept what the doctors had to say. "To make me understand, Dr Shivam pinched Vaasu on his forearm. He did not respond to that as well," says Neha.
Accepting the truth that her child was different from others was not easy for Neha. Shivam gave her a long list of do's and don'ts to cope with Vaasu's condition. Neha's life changed that day.
She gave up her lucrative career to be with Vaasu all the time. Vaasu, who used to watch cartoon channels throughout the day, was to be taken off television completely. As suggested by doctors, Neha stopped wearing bright clothes. Bright-coloured bedsheets were replaced by dull ones. All sharp objects were removed from the house. She now doesn't take Vaasu out to malls, birthday parties or a relative's place.
"I have been closely following the instructions. Initially, it was difficult to explain all this even to a close relative. The only option was to avoid meeting people," says Neha.
For all the endurance, Neha has received her biggest award; Vaasu now calls her mamma. He talks to her and expresses his feelings—be it pain or hunger—in limited words. "At least he has started recognising feelings. He understands if I am sad and asks me what happened. He tells me if he wants to eat something, though he can’t differentiate lentils from vegetables. He touches his body and tells me if there is pain," she says.
Neha has managed well her role as a caregiver, which can be very stressful. Says psychiatrist Dr Jitendra Nagpal: "It is not uncommon to see families breaking down when a family member is diagnosed with mental illness. There are times when these family caregivers need psychiatric help."
Studies state that 90 per cent of family caregivers are at high risk of developing mental illness. "This is what we call caregiver burnout," explains Dr Pankaj Agrawal, Parkinson's disease and movement disorders specialist, Global Hospitals, Mumbai.
Shruti Bajaj was four when she first saw her sister Naina throwing herself on the floor of the house, crashing crockery and beating her mother. “I grew up watching my sister do these at least twice a month. I thought it is a normal way to react if you are angry. In fact, I attempted the same behaviour on a couple of occasions myself. Then mother told me that she does it because she is ill and I stopped doing it," says Shruti.
Shruti was 15 when she realised her sister suffered from schizophrenia and bipolar disorder. “At times she would be a normal, happy girl but most of the time she would be withdrawn and quiet. Anything could trigger her anger and then she would be uncontrollable,” says Shruti. Her mother couldn't bear the trauma of Naina's illness. She fell ill and died when Shruti was 21.
Since her mother's death, Shruti has been taking care of Naina. She can no longer have a normal life, Shruti feels. “It is difficult to get a housemaid to take care of Naina. Even when there is one, I cannot leave Naina with her. There is no time for a break and I feel depressed at times. But what can I do? I cannot leave my sister," says Shruti, who is now consulting a counsellor herself.
"It is more of a burnout they say and recommend I take a holiday," she says.
To be a caregiver is taxing—physically, mentally, emotionally and financially. To care for a near one and not be affected by their behaviour, one needs to emotionally detach oneself, which is not possible for most caregivers.
Mental illness affects how a person thinks, feels and acts. Patients find it difficult to differentiate between reality and imagination. They cannot think logically or express their feelings. Besides, persons with psychiatric illnesses require expensive medication, special classes to help them deal with their special needs, physiotherapy, and a full-time attendant to help them with their daily chores. It often takes a toll on the entire family. The family faces financial crunch and children lose out on studies if the earning member develops a mental disorder.
Dr Praveen Gupta, director, neurology, Fortis Memorial Research Institute, Gurgaon, says that family members of patients suffering from cerebral palsy, Parkinson's and Alzheimer's disease suffer on various counts. There is also a social stigma attached to these diseases. “There is a lack of acceptance to the needs of people suffering from mental problems and that leads to social isolation of the whole family. This causes their breakdown," he says.
In an article by Dr Rakesh K. Chadha of All India Institute of Medical Sciences, published in the Indian Journal of Psychiatry, he emphasises the need for mental health professionals to identify the needs of family caregivers, the stress they face and introduce suitable interventions so as to reduce the burden. Unfortunately, there is little available to help caregivers in India.