Thursday, January 31, 2013

The problems faced by families (in India) who have mentally ill(MI) members has been documented by various researchers and the information has been made public in newspaper articles and television. However, there is little information about the problems faced by the middle-class families who have MI members. (I do know that the problems faced by the poor and the rural families are much much more than the problems faced by the middle class…but I am not talking about them here).

Here are a few problems faced by middle-class families with MI whom I know. The families I am writing about are all Bangaloreans, related to me or my friends or neighbours. The lives of these families, I am sure, reflects the lives of the millions of middle-class people facing MI in India.

Stigma: Fear of stigma, prevents some of my friends to go the ‘whole way’ to seek help. While a few family members are ready to get an ambulance or seek police help to deal with the MI person refusing treatment, there are others in the same family who do not want to get the help of the police. If these family members have power and have their way, then the person remains untreated and the problems caused by the MI continue, affecting everyone in the family.

Economics: These families have poured so much into the treatment or simply keeping the MI at home that some have had their savings and property eroded slowly over time. A surprising fact is that it is not the cost of the medicine or the hospitalizations which has caused the biggest dent in their savings. It is two other deadly factors: (1)a family member who gives up on his or her career and loses earnings and (2)the losses caused by the spending sprees and other behaviours of the MI

(a)  A family member who is capable of earning gives up their career or compromises in some way, so as to have the time to look after the MI.  The people who are not working and at home are usually too old and weak to look after the MI……it has to be an able bodied person and so one person, gives up on career.

(b) The MI, due to the nature of the illness (such as mania or a personality disorder) spends extravagant amounts of money, though he or she is not earning a dime! The families are unable to control this spending and some weak-minded family members buy peace by giving in to the demands of the MI. I have a relative who goes on trips costing thousands of rupees at least once a month. I know a friend’s sibling who has taken loans of lakhs of rupees and invested in businesses which failed. Now the entire family is on the hook for these loans….and he will be taking more loans this month! He says he will repay when his business improves and his family is too scared of him to effectively stop him or boot him out of the house.

In Canada, if a mentally ill person, who refuses treatment, demands money aggressively, the family simply dial 911 and the police, with the help of  community or hospital based mental health staff, take the MI to the hospital for treatment. If the person is difficult to manage at home, the family make him leave. Unlike, India, the MI does not land on the streets. In Canada, there are group homes and other living arrangements (for their entire life!) for these people. The MI also receive a pension ( example ODSP or  Welfare) which enables them to live without draining their families financially.

Social Burden of care: The families are drained not only financially but in so many other ways….

·        It is difficult for the siblings of the MI to get married especially if the prospective grooms and brides believe in genetics and worry that the ‘normal’ sibling may be carrying the gene for the MI.

·        The difficult behaviour of the MI leads to the family gradually withdrawing from their friends and relatives. They stop visiting  and stop inviting people over and this isolation  leads to a whole lot of other problems . They need more support when caring for a mentally ill person … instead, they are cutting off from the support they have.

·        The more problematic behaviours of the mentally ill, leads to quarrels in the family and breakdown of the relationships within the family.  Of all the behaviours, the worst are aggression especially physical aggression, excessive spending and paranoia or suspiciousness.  As I said before, the spending behaviours of the MI have brought middle-class families to bankruptcy and plunged them from upper middle class to lower class levels.

·        The physical burden of care too takes it’s toll. The bitter complaint of many middle-class people is the lack of trained and trust-worthy people  whom they can hire to help in taking care of the MI. One family I know wants to hire a man who will help an aged gentleman in the family with dementia with toileting and dressing but are unable to find anyone.(India has a population of a billion plus but when you want to hire people, you will not find them!) Their needs from the hired help are so simple but they are unable to find one!

·        Break-ups within the family: If a husband is mentally ill, his wife will blame her in-laws for deceiving her into getting married(in case of arranged marriages) and she will end up hating her in-laws. For various reasons, she is unable to divorce and is forced to live with her MI husband and in-laws, who are her support, in looking after her husband.

Another example is of a lady who has to put up with her unmarried mentally ill sister-in-law, as she lives in a joint family with parents in law & sister in law.. This MI individual, wields immense power in the family(it is her symptoms which give her this power!) and her crazy decisions have to be followed or else she throws  tantrums which the family cannot endure. While there are 8 people living under one roof, there is little love lost between them, due to the strain caused by the MI lady. They are living in one house, but considering the bitter  emotions they have towards each other, I would not call it a home.

In Canada, I have observed behaviour therapists go into the homes and train the families to deal with these behaviours and bring these behaviours under control with the use of behaviour therapy (in addition to psychiatric medication, family counselling, etc). However, even though there are psychologists trained in behaviour therapy in India, even though there are psychiatrists, not much is organized to treat these behaviours, either because the system has not been created or the family is reluctant to use behaviour therapy techniques.

 Another example is of  an unmarried sister who is living with her parents and has to look after her mentally ill brother.

 The list of people who are the unwilling carers of the MI goes on endlessly.

Effects on children growing up in a home with a MI: I have observed two girls grow up into adults in a family with a MI person. This MI person’s symptoms have never been fully under control and her behaviours are characterized by suspiciousness, aggression, anger, over-spending, impulsiveness such as joining and giving up expensive educational courses, going on travels, etc. This person does not earn but spends more than the entire family put together! Her behaviours and quarrelling with the adults in the family has had negative impact on the children who grew up in this family. It is a terrible tragedy, which the entire set of 200 relatives has watched for years with sorrow and anger and helplessness! No one wants to be firm with the MI, no one wants to confront her or treat her in an effective manner or put limits to her behaviours. I am unable to see any major psychological damage in the kids who grew up in this house , thank the lord but I am sure some damage is there.

The constant worry of the parents of the MI: Who will look after this person when I die is a constant worry. There are no institutions to take care of the MI in India…there are a handful but not enough. Many of these institutions do not do a good job of taking care of the MI admitted into them. The parents who have observed the siblings hating the role of the care-giver worry about the MI child being abandoned, once they die. Which does happen in some cases.



Why does this situation happen?


These are my reasons why these situations happen(in India). By these situations I mean, why are the erratically behaving MI, who ruin the lives of their family members tolerated.


(1) Some Mental Illnesses such as schizophrenia, personality disorders, etc cannot be cured completely. Some symptoms, the moods and behaviour problems continue. Some mental illnesses or some mentally ill  can be cured but factors such as

a)     Poor skills in treating professionals

b)    The mentally ill refusing treatment because of side-effects of drugs

c)     Mentally ill refusing treatment as they refuse to accept they are mentally ill and neither the family or the treating team can make them take medicine/treatment

d)    Inspite of being on the right treatment, right doses, regularly, some symptoms or behaviours or personality traits cannot be corrected or changed. Increasing the dose only leads to deterioration of health but not change in the problematic behaviour.

e)     Some families do not believe that their child has MI. (Denial) They refuse to seek treatment and attribute the problem behaviours to other causes :example. This is what a mother said of her alcoholic son “He will stop drinking if his wife treated him with more love and attention”.

f)      Some families prefer to go to a temple for seeking divine intervention than going to a psychiatrist. Some go to healers and tantrics…Yes, even the educated and middle-class urban Indians go to these people than a psychiatrist.

g)     Another cause in delay in seeking psychiatric help is the increase in the family’s tolerance for the MI’s increasingly erratic behaviour. It is only an outsider who can see the abnormality in the MI’s behaviour. The family’s tolerance has increased proportionate to the  deterioration in behaviour and so they fail to notice (or pretend? To fail to notice) the onset of MI. I have seen this in the families of so many schizophrenics. When an undiagnosed schizophrenic was violent, his mother explained by saying, he is short tempered and that it’s okay!


I can go on and on about these issues but I want to understand and analyze, why do the family members put up with this shit??

Children: Have no choice, no understanding of the situation and even if they can, where can they go, leaving their home? It is not possible to ask relatives to care for them. One can put the children  in boarding schools but is it an option if the child does not want boarding school? So children, the most vulnerable of all, have no escape but to live in the house with the MI.

Parents: If I am the parent of a mentally ill, I think, it is my responsibility to look after my MI child, whom I created/gave birth to. Of course, I would not have had this MI child, if I knew in advance that my child would be mentally ill! Some parents do get their MI kids married so that there is someone to look after them, when they die but I do not think I will do that. One psychiatrist whom I admire a lot, is a very optimistic person who does not see anything wrong about the mentally ill (such as schizophrenics) getting married but I am a bloody pessimist! In Canada, there is a lot of advocacy done for the MI and it is believed that they too have the right to marry, etc. But in Canada, they are supported by disability pension by the government. In India, the family has to support a MI, if he is not working. And if a MI man gets married, either his wife is to be supported by his family or she has to support him or her family has to support their daughter and their MI son-in-law.  What option is considered good here??? Put yourself in the place of each of these people
I am witnessing a sad story unfold itself in India.
This is a family with two aged parents (70-80 years), two daughters and a son. While the youngest daughter is married and living with her husband, the son and his wife, and the oldest daughter who is unmarried live with the aging parents.
The son is suffering from a mood disorder (manic at present) and has become increasingly belligerent and nearing a stage when he may become violent soon. He is spending massive amounts of money, not doing anything to earn and demanding money from his hapless parents, sister and wife. He refuses to take medication and cannot be taken to a hospital for treatment.  The combined physical efforts of his wife, sister and aged parents are not enough to hold him down when he is violent. Hence, his family simply give in to his demands and manage by cajoling him than being firm. To date, he has spent huge amounts of money on needless things and has taken loans from various banks and is plunging his family into debt. It is impossible to make him see reason….he has lost all common sense and has these delusions of grandeur…he believes that if he is given the money he asks, he will do business and earn millions of rupees.
This family has spoken to psychiatrists but they are not able to help unless he comes in to get admitted. They are now considering taking the help of police and are trying to contact a relative who is in the police force to get him to go to the hospital.  However the old mother is adamant that neither a police van nor an ambulance come to the house to take him for hospital admission…..She does not want the neighbours to know he is ill but it looks like everyone of their relatives, friends and neighbours have put two and two together and guessed about his mental illness since several years. 
This is the current situation and has been going on for the last few months i.e. since he stopped medication.
This guy was on medication without his knowledge ( a common practice in India where this is practical/effective and not considered unethical either by the doctors or the families) for a few years before this. He was not working but manageable at home. He was passive and spent his time at home.
The psychiatrist who saw him appearing quiet and amenable decided to inform him that he should take medicine as he needs it. This guy agreed and the family stopped medicating him secretly and started giving it to him. Predictably, he stopped taking after a few months and had this current relapse. 
My friend, the oldest unmarried daughter in the family, asked me for advice and I was unable to come up with anything new. I felt so bad about it. My friend says she needs a ‘man’ to get her 6ft 2” brother to go to the hospital or take his medication.
 Her brother has now become so distrustful of his family (for medicating him through food) that he eats at the hotels all the time or cooks himself.  And without medication, his demands for money, his spending and his loan taking are getting out of control. She is fearful of warning his creditors not to loan him, as he can attack her if he ever comes to know that she has warned people not to loan him money.
This is a situation I have seen often in India. Where the mentally ill in the family is powerful and the family is helpless….where the mentally ill refuses medication and there is no system in the government or the society to deal with the situation.  I have also seen a violent mentally ill person, overcome by his or her relatives, beaten up, tied up and brought against their will to the hospitals.   The mentally ill is taken ‘ tied up’ into the hospital, injected with a sedative and only then the ropes are  untied.  I have seen only rarely, the  use of a sedative injection at home, before bringing the mentally ill to the hospital.

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