Wednesday, March 27, 2013

The mentally ill in India …whose responsibility are they? part 2

I am writing part two as I went off course while writing the previous article!

When I began writing the previous article, I  wanted to discuss  about the concept of selfishness or selflessness of family members and who among them  should  take care of the mentally ill ....instead I wrote about the Indian government doing more for the mentally ill and so on.

Selfish or selfless and self-sacrificing?

In the olden days, when joint families existed and nuclear families did not, care of the mentally ill was not such a big issue. In the old days, most women did not go out to work but stayed at home. More people lived in villages than in cities. Therefore the care of the mentally ill or the mentally retarded or any other type of disabled or dependent people and children was not a big issue in India. There was always someone at home i.e the aged grandparents, the women of the house i.e. daughters-in-law and daughters who did the cooking, household work and also looked after the mentally ill.
The income of the family probably came from the family business (maybe agriculture or business or sons working outside and either handing over the income to their mothers(even if they were adults and married) or fathers, who ran the household.

But today, there are major changes in India:
more people live in cities than before;
 more people are now living in nuclear families.... married brothers & their families no longer live under one roof with their parents, uncles and aunts like in the past when large joint families of three to four generations under one roof.
Therefore if a person has mental illness or mental retardation, the only ones who will look after him now would be his parents or his spouse(if his parents manage to dupe someone into marrying him and that person, does not divorce for whatever reason). If he has a selfless sibling and his sibling's spouse agrees or is forced to house him, then, he will be cared for by a sibling in the event of the parents death or inability to look after him.

OPTION ONE:To be selfish and care for one's spouse and children... and neglect the mentally ill sibling/parent/whoever the relative that the right way to go?
OPTION TWO: To take on the care of the mentally ill sibling or family member.... and giving up a lot in terms of financial burden, time spent in taking the ill to the hospital, time taken in calming him down when he is symptomatic, time given to the mentally ill instead of one's own hobbies or time with one's children's and wife; the stress of explaining to the spouse who resents the time, energy, money spent on the ill sibling.
In the villages, even today,where joint families continue to exist, I have seen the mentally ill cared for by their parents, grand parents, siblings, children and so on. The mentally ill wander about in the village, relatively safe from harm as most people know the mentally ill and the family. (Yet, there are cases of mentally retarded girls being sexually abused by 'known' people  in villages)
In cities, most people live in nuclear families and as far as I know, among the middle class in Bangalore, most women work. Therefore if a mentally ill person is at the home of a sibling, chances are that, they will be alone at home during the day. Unless, their symptoms are under control and unless they are trained to be safe when alone at home, it can be a problem to house the mentally ill or mentally retarded. In the cities, the mentally ill, especially if sympotamatic or if a  young girl, cannot be allowed to wander outside  the house as they are vulnerable and the people in cities cannot be trusted...I mean that the possibility of abuse and exploitation is higher in cities  than in the villages, especially if the residence is in a low income area or high crime area. Also if the vulnerable person wanders into unfamiliar area, the chances of danger are high. The  mentally ill, when symptomatic  cannot be locked up at home, while the others go to work. They can be trained to be safe but one does not know, when they may relapse and do something which endangers them or the home.
I can give examples of the people who housed a mentally ill sibling and faced difficulties. One adult schizophrenic who lived with his brotherr's family,  sold the furniture of the home to buy 'sweets' as he was hungry! His furious sister in law thereafter refused to give him the key to the house. Rain or shine, he had to wait outside the house, every evening, until his brother or sister in law arrived from work.
There was another mentally ill who would go outdoors, without locking the front door, before leaving.
I can give several such examples but will stop here.
The financial burden , for the middle class may not be much, if they merely feed and clothe the mentally ill. I know how terrible this only to their basic needs and not more. But considering human psychology, the burden of care, the inflation, difficulties of living in a country like India, just housing and feeding and clothing a mentlaly ill sibling is...... a lot. Unlike, countries like Canada and some in  Europe, the Indian government does not take care of the mentally ill. The burden of care rests on the family.

The struggle in one's conscience and the debate one goes through daily, while supporting  a mentally ill is simply huge. Here are the three cases I mentioned in another article in my blog and the daily debate about caring for them

(1) An unmarried mentally ill lady about 50 years old, living with her mother, brother, sister-in-law and 2 nieces. She has 2 other siblings who are settled abroad. She has been suffering from mental illness from her teenage years and though on high doses of medication, she exhibits severe behaviour problems at home. The doctors cannot hike the medication as she is on high doses already. She refuses to get admitted to a hospital for treatment or admitted to a half way home or rehabilitation centre. The family cannot make her. She is verbally and physically aggressive, spends a lot of money(she is not earning), is paranoid, impulsive and is such a menacing presence in her home that the other people in her house, suffer a lot. They fear her and do what she says in order to buy peace.
The sister-in-law and the

(2) A married mentally ill man in his 40s, is living with his parents, wife and oldest sister who is single. He was running a business in his 20s and 30s but as his illness got worse, he had losses in his business due to poor management and he stopped his business. He was staying at home in a very passive manner for a few years when he was on medication. He was medicated by his family, without his knowledge as he would not take medication willingly. Before the readers from the advanced countries scream about his rights, let me tell you that this is a common practice in India, which even the trained professionals (psychiatrists) recommend, if the client is unwilling to take medication and he is physically aggressive. Secretly medicating is the only practical option for families when the mentally ill person is non-compliant with medication, is physically stronger or is in a position of power in the family. This mentally ill guy has one more sibling, who is married, has a child and living with spouse, in another part of the same city. This sibling is not involved in his care in any way.

(3) A mentally ill single lady in her early 50s,unemployed and living with her mother and sister. She has never been diagnosed until recently i.e. when she was in her forties. The doctor did not give a diagnosis but gave her tablets and her behaviour, whether due to the tablets or other reasons, has gradually improved. It is difficult to say if she has psychosis(no evidence of hallucinations and maybe she has some delusions) or a personality disorder or whatever. She is the second of eight daughters born to a lower-middle-class businessman. Years ago, she was told by an astrologer that she will marry a rich person and subsequently she refused to marry all the prospective bridegrooms her parents showed her as she was waiting for ‘the rich guy’ the astrologer had predicted. She spent her time at home, refusing to do the household chores, refusing to study further or get a job. She sat and waited for the rich groom, who never came. Meanwhile, her dad did not try to get the other daughters married …he wanted to finish his second daughter’s marriage, before going on to the third. After waiting for many years, and after the father’s death, the other girls found men on their own and married. This mentally ill lady at some time in her late twenties started showing behaviours which her exasperated sisters attributed to jealousy and meanness. She would grab the newspaper and sit with it until the sisters left for work or college, refusing to give it to anyone else. She would finish all the water which the sisters had carried up in pots from downstairs and refuse to bring up any water. This was not considered as mental illness at the time.

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