This post is not about Mentally Ill. This is for Caregivers particularly family caregivers of persons suffering from Mental Illness. This is an interview with care-giver par-excellence Mr. Amrit Bakhshy-this is about his journey as caregiver, this is about most intractable of mental illnesses “Schizophrenia”, this is about his pearls of wisdom to both sufferers and care givers, this is about the journey of the making of his book- “Mental Illness” and Care Giving” and finally about his views of New Mental Health Legislation.
It took seventy years after independence for the Mental Health to come nation’s center-stage. Starting 24th March, 2017, when the Mental Health Care Bill, 2016 was introduced in the Lok Sabha by Union Health Minister, J.P. Nadda, and subsequently when the bIll was passed unanimously by the Lower House on 27th March, unanimously with the bi-partisan support of all the parties, the subject matter of Mental Health and Mental Illness have been thread bare discussed in hundreds of articles, reports and editorials and for the first time in the country the subject became “Breaking News on National Television Channels” and trended as top item in the social media sites.
The subject matter has got further traction with Prime Minister Narendra Modi taking it up in his Man Ki Baat on 26th March and with World Health Organization (WHO), dedicating 7th April, 2017 to Depression with the theme, “Let Us Talk Depression”.
But in all the discourse and narratives on Mental Illness, one subject that universally get shortchanged is the “Role of the Family Caregiver” including the trials and travesty of the Care Givers themselves. The subject has so far received scant attention in a nation where most mentally ill (whether they are suffering from severe or common mental illnesses) are taken care of by the family. Most of the time, family itself is mired in darkness, ignorance and stigma.
And there is a much larger issue, severely Mentally ill often survive longer than caregivers -and every care giver in the evening of his/her life asks a difficult question- “What after me? Who will take care of my son/daughter or spouse suffering from Mental Illness”? The country does not have answer to this difficult question yet.
On the eve of 7th April, the World Health Day, Akhilvaani decided to talk to Mr. Amrit Bakhshy, who has not only proved to be a care giver par excellence to his Daughter Richa suffering from Schizophrenia for last twenty five years but who for the benefit of care givers has authored only book written in the country for care givers.
Here is the detailed interview.
Akhilvaani: Question 1:
Amrit ji yours has been an amazing contribution to the field of Mental Health in India for decades. Your most recent contribution is the book “Mental Illness and Care Giving”: Challenges, Concerns, Complications”. At the outset, tell me about the Journey of the making of the book, which to the best of my knowledge is the first book of its type written in the country that addresses the concerns facing family and friends of Mentally Ill.
Yes Akhileshwar; to the best of my knowledge, this is the only book available which is specially written for Indian caregivers of persons with mental illness.
The idea of writing a booklet for caregivers of persons with mental illness evolved over a period of time. Caregivers were coming to the office of Schizophrenia Awareness (SAA) and also to my home to discuss their problems. I would also receive quite a few local and outstation calls from caregivers.
But there were so many caregivers who did not know me and to whom I was not able to reach. I was getting anxious that the knowledge I had gained over the years should be made available to a much larger number during my life time and thereafter. Such thoughts prompted me to start writing a booklet for caregivers containing helpful information and practical tips.
Although I started writing more than a year back, there were continuous interruptions and breaks as other important assignments with a deadline got priority. Also while writing, I kept on adding more and more information which I thought would be useful to caregivers. But I did put a stop when the number of pages reached 200. I did not want the size to be intimidating for the caregivers.
it was a highly satisfying journey, the end was like a mother delivering a baby, a feeling of contentment and also a feeling of relief that it was over.
Akhilvaani: Question 2:
Your journey as a Mental Health Advocate, researcher and authoritative voice on the subject started at a personal note. Would you like to elaborate on that.
My journey in care-giving started in 1991. I had no clue as to what we were heading for. Groping in the dark, I started learning the ropes, trying to understand the implications of the most dreaded illness my daughter was afflicted with. The internet had just made its advent and some information was available on Wikipedia and other sites. I read every literature on the mental illness, I could lay my hands on. I wanted to learn enough to be a good caregiver. I never thought beyond that.
In 2007, I left my lucrative job in Bombay and moved to Pune lock stock and barrel, hoping that SAA in Pune would be conducive for my daughter’s recovery. When in SAA, I was encouraged by SAA’s founder, Canada based, Dr. Wani to take higher responsibilities in SAA. In 2010, I took over as the President of Schizophrenia Awareness Association. The rest is history.
Akhilvaani: Question 3:
What impact Schizophrenia of your daughter (please also write her name, you have already given her photograph in the book) had on you and your wife initially, how you coped, what worked an what d did not work in improving her illness and what finally helped her not only to stabilize but to come to present level of functionality.
When we learnt of mental illness of my daughter Richa, we did not realise the gravity of it. Our concern then was that her education should not suffer and a year should not be lost due to her illness. When the seriousness of the illness dawned on us, it was devastating. My wife left her job to be with Richa at home. Our ignorance and lack of proper guidance aggravated her illness. We had a harrowing time in managing her at home. Gradually I started understanding her illness and developed contacts with other stake holders.
Richa’s attending the SAA’s Day Rehabilitation Centre definitely contributed to her recovery. Instead of spending all 24 hours at home, she was able to spend 7/8 hours away from home, meet peer level persons, learn new skills, socialise and participate in therapeutic activities. But, as you know so well, it would be wrong to assume that she has stabilized. There are no repeats of the harrowing days but there are ups and downs and lows and highs. As a caregiver, I feel contended that this level of recovery has been achieved.
Akhilvaani: Question 4:
Schizophrenia is a life threatening and often life long mental illness. Can you tell for the benefit of readers- what the illness is like, what is the typical age of onset, what are the best ways to cope up, and how to improve the functionality of some one suffering from Schizophrenia.
Schizophrenia is, undoubtedly, the most dreaded of all mental illnesses.
There are a whole list of symptoms indicative of schizophrenia. But If a family member is seen smiling and talking to himself/herself or shouting, screaming and cursing for no apparent reason, it is a definite indication of schizophrenia and a psychiatrist needs to be consulted at the earliest.
The symptoms of the illness appear in most of the cases in late teens or early twenties. The best way to manage the illness is to start the treatment at the earliest and strictly comply with the prescribed medication. Avoiding stresses, regular counselling by professionals, engaging gainfully in some outdoor activities prevent aggravation and are conducive to recovery.
But each case is different. A mental health professional’s advice should be taken and complied with. In course of time, a caregiver learns how to handle the situation. There is, however, no single solution to improve the functionality.
Akhilvaani: Question 5:
Tell me something about Schizophrenia Awareness Association (SAA) headed by you. How it came into being.? How you came to SAA?. What SAA does and the direction in which you have taken SAA in recent years as its President?.
Schizophrenia Awareness Association was founded in 1997 by Canada based Dr. Jagannath Wani himself a caregiver of his wife mainly to create awareness about schizophrenia and related mental disorders. I came to SAA in 2007 as I believed my daughter would have chance of recovery if she attended SAA’s Rehabilitation Centre.
I took over as SAA’s President in 2010.
During my tenure, I have tried to make SAA’s Rehabilitation Centre as one of the best in the country. SAA has started several new initiatives to create awareness about the mental illness. Apart from conventional modes, SAA now makes use of social media. We have an educative website and I myself have started SAA’s Facebook page which has around 2000 fans and almost an equal number of followers.
SAA is now known nationally and also internationally and is actively involved in advocacy.
Akhilvaani: Question 6:
These days I am finding a small but growing band of young Indians claiming that they can and have cured their severe mental illness without medications or doctors assistance. What is your view on the same and what advice you have to offer to those who are groping the dark about their illness.
Yes, it is getting trendy to claim recovery without medication. Such claims, however, have not been independently substantiated. My advice to young patients and their caregivers is not to get carried away by such unsubstantiated claims and strictly adhere to the treatment prescribed by the attending physician.
Akhilvaani: Question 7:
India has tremendous stigma around the subject of Mental Illness. How has your perspective changed over decades once you have been inside the ring as principal care giver to your daughter. Can you briefly elaborate journey of your daughter from being diagnosed from Schizophrenia till now.
Before the illness struck my daughter, I hardly knew anything about mental illness. My childhood memory was of homeless mentally ill moving naked on the streets with excreta and other filth on their body; people laughing at them and shooing them away. There were also gossips heard that someone shouting in the neighborhood was Pagal and was given electric shocks.
It never occurred that it could also happen to someone in our own family.
When it happened to our daughter, it took quite some time to sink in, the devastating nature of it and how it was going to change our lives for ever. Our ignorance and non availability of guidance, led to our making mistakes which caused aggravation.
My wife who was totally against any rituals, started praying for hours and following all the rituals any one advised. Reluctantly, I agreed to her doing such rituals but made it clear that medicines would not be stopped and Richa would not be touched to bring out the evil spirits.
The life was hell for us.
There was a continuous fear of our daughter harming herself or us. The neighbors resented the shouts and feared for their children. Our relatives and friends deserted us. Often I had to leave meetings and other important work in my office to handle emergencies at home.
While undergoing all such trauma, my wife and I resolved that under no circumstances, we would send her to an institution.
In 1993, I learnt about the wonder drug Clozapine for schizophrenia patients with 94% success rate. Clozapine was not available in India. So I imported it from Switzerland at an enormous cost. Clozapine helped and my daughter’s symptoms came down. But there were side effects, she drooled and slept for long hours.
During one of her holiday trips with Richa to Dehradun, my wife was ill advised to discontinue the medication and start homeopathy medicines which she did without consulting me. It caused havoc and what was achieved with 125 mg of Clozapine, could not be achieved even with most aggressive dosage of 700 mg. Later when she was at NIMHANS, once again the doctors discontinued Clozapine, kept her without medication for a few weeks and then put her on the new drug Resperidone which, when I came to know about it seemed rather unethical.
Remission to some extent was achieved in 2008. Medicines and recovery tools at SAA helped. Since then she is fairly stable. Ups and downs keep on happening but downs are nothing compared to what the family suffered in the first 16/17 years of her illness.
Akhilvaani: Question 8:
I had the privilege to be present in the launch of your book at Pune. Tell me about the central message of the book. What you want to convey to sufferers of Mental Illness and their caregivers through the book?
My book is a compendium on mental illness and care-giving written especially for Indian family caregivers of persons with mental illness. The book prepares them for their care-giving role. It gives them almost all the information that they need as caregivers. It answers almost all the questions they might have in their mind. The book also tells them about their rights and the need to look after themselves.
Akhilvaani: Question 9:
This is a rather personal question and you can decide to skip the answer. Over last decade or so, I have often seen caregivers in the evening of their life asking the existential question- “what happens to my spouse/ son/daughter suffering from Mental illness after me” ? Today you are care giver to both your daughter and your wife, and have been handling the whole situation with amazing grit and magnanimity. First what message you have for similarly placed care givers?
Providing care to both my family members who have different ailments and taking over all the domestic chores from my wife is, indeed, daunting and exhausting for a person like me who is now in the 4th and the last stage of life. My spirit is willing but my flesh is weak.
As regards caregivers’ worry “What after us?”, we have been suggesting to them about the arrangements they should make. But my experience is that most of them keep on worrying and complaining but don’t do anything about it. You can lead a horse to water but can’t make him drink. The caregivers should make a will and create a private trust for the benefit of their ward who has mental illness.
Akhilvaani: Question 10:
What do you think should be nation’s composite response to the question “what after me”?. How can we strengthen the care giving frame work in the country to improve the care giving system? Rather how to have a system that works from where there is no system?
There are salutary provisions made in this regard in the National Mental Health Policy announced by the Central Government based on the recommendations made by the Mental Health Policy Group of which you were an expert member. The need is to persuade the Government to start implementing the Policy.
Akhilvaani: Question 11:
Care giving to some one suffering from severe Mental Illness is in itself a full time occupation. For last few years you have successfully been working for betterment of life of Mentally ill both in individual capacity and as well as President of Schizophrenia Awareness Association. What motivates you to be one of such champions of Mental Health that India needs badly?
For me it is a mission.
Unfortunately, my journey as an activist started late.
My profession and care-giving of my daughter left me no time to pursue any social cause.
For the last 10 years, after I left my job, I have committed all my energy and time for mental health cause. Schizophrenia Awareness Association, provides me a platform to work for the community. It is gratifying for me that I am able to help fellow caregivers and reduce their suffering.
Akhilvaani: Question 12:
You are one of the few persons in the country who have threadbare analysed the provisions of Mental Health Care Bill, 2013 passed by the Rajya Sabha and Lok Sabha that is awaiting approval of the President of India to become the Statute.. For the benefit of beginners can you briefly tell what beneficial impact it will have on the life of sufferers and care givers of Mental illness?
The Bill has many salutary provisions for persons with mental illness. As it is a Mental Health Care bill, there are no direct benefits for caregivers. But anything which benefits persons with mental illness also benefits their caregivers.
The Bill gives the persons with mental illness the right to access mental health care, treatment and services run or funded by the Government.
It also gives them right to live in the community and provides protection against cruelty, inhuman and degrading treatment. It provides for safe and hygienic living conditions and privacy and forbids making them work against their wish.
It gives them right to decide their nominated representative and write their advance directive. Physical restrains, sterilization, direct Electric Convulsive Treatment (ECT) without use of anesthesia or muscle relaxers, ECT to children are prohibited. Attempt to commit suicide will not be a criminal act and those who attempt it would get help and counselling.
I can go on describing the salutary provisions but the scope of this interview would not permit that.
Akhilvaani: Question 13:
You have seen working of institutional Mental Health Care system (read Mental Hospitals) from very close quarters. You are also part of a government committee in this regard. Please educate the readers as to what ails the present system and what are the type of reforms urgently require?
The conditions in government mental hospitals with the exception of 4/5 Central Govt. run prestigious Institutions, is pathetic.
Even the hospitals which are accredited as Centers of Excellence have much to improve.
Housekeeping is poor, patients are ill treated, there are leakages and malpractices. Under directions from the Supreme Court and also at their own initiative, National Human Rights Commission did carry out inspections of some of the government mental hospitals and the rapporteurs sent by the Commission did a very good job.
But reforms cannot be brought by a single inspection. It has to be a regular feature. It takes time and persistent follow up to bring about change.
Having said that, the conditions in many private half way homes is no better. Patients and their families are fleeced and the services provided are pathetic. As there are limited beds, consumers have very few options.
In my view the rules framed under the Mental Health Care Act must provide for minimum standards to be observed by mental health institutions and those who do not comply should be made to forfeit their registration.
Akhilvaani: Question 14:
What should be done to reduce societal stigma around Mental Illness in the country
Talking and sharing about Mental Illness is the way to reduce stigma. Those who are mental health activists have to give a lead and set an example. Govt. must start campaigns against stigma and to promote awareness, the same way they have done for cleanliness and use of toilets.
Akhilvaani: Question 15:
What is your final message to the readers
My message for families is that Mental illness is like any other illness. T
here is no need to hide and no need to be ashamed of it.
Start the treatment at the earliest; ensure the human rights of the family members with mental illness and work towards their rehabilitation.