I was 10 years old when my parents decided that we must shift to my ageing maternal grandparents house to take care of them. My mother was the youngest of three siblings and also born to my grandparents when they were in their 40s. She had taken on caregiving responsibilities to my grandmother from the age of 14, when my grandmother had suffered a hip fracture and an unsuccessful surgery that left her crippled till she died at 89. Her two older siblings – a sister and a brother – were settled in Delhi and Frankfurt, and since she was the only one living in Calcutta – the same city as my grandparents, the responsibility of taking care of them naturally fell upon her and my father.
Two years after we had moved in with them, my grandfather passed away, ending a marriage of over 40 years for my grandmother. She never wanted a picture of him hung or framed in her bedroom. An academic and a teacher, she was an intellectual, a voracious reader, strongly analytical, agnostic and restrained. My memories of her are very powerful – someone who would read newspapers with me and discuss social issues, a storyteller and someone who always asked me questions to sharpen my rationality, often making me question and reflect upon my impulsivity and reactivity. But I deflect. This is not a literature about my relationship with her, but about my memories of how my mother took care of her, and the struggles therein.
You see, after my grandfather died, my grandmother started believing that she was being slow-poisoned with arsenic in her water and food. Gradually, the suspicions fell upon my mother and some on my father. She would hallucinate that intruders would come into her room every night, and use technology to dislodge ventilators to create tunnels. The family physician advised against any treatment given her age (she was in her 80s at the time), despite her showing obvious symptoms of paranoid schizophrenia. He did not think that my mother or my father needed any help.
While Ma had a long experience of caregiving and home-making since her teens, what took a toll on her, and to some extent my father as well (and their interpersonal relationship) was being able to cope with the emotional and psychological stress, and the social implications of having to deal with a victim of mental illness – where the fact that she was being accused and shamed by her own mother had much stronger impact on her than her illness itself. I shudder to imagine to what degree the stigma mental health illnesses were present not only amongst general population but amongst physicians themselves that he only advised my parents to deal and cope with it ‘rationally’. Had she been treated, whether or not she would have allowed my mother (or any other hired caregiver) to give her medication, I wonder, but that is besides the point.
My mother’s siblings were sympathetic but distant. They had they own families, contexts and international or even domestic travel in those days was neither as common, cheap or easy. My aunt still managed to visit a couple of times in a year. My uncle, unfortunately, to whom my grandmother was very close, may have visited India 5 times in 4 decades. Extended relatives were voyeurs and spectators, sympathetic to my mother and also grateful that they were not in her situation. And the absurdity of hallucinations and imaginations, and the paranoia sometimes became topics of humour, perhaps that is how we cope with what we do not know how else to handle. As a child, it made me feel angry, disloyal, confused and helpless.
I am talking about India in the early 80s. Today, there is a lot more awareness about mental health and illnesses, even if we have a long way to go. There are several non profit organisations like Ishwar Sankalpa and Anjali in Bengal or Banyan in Chennai who are providing services to people who suffer from mental illnesses and are sometimes pushed out of homes onto streets or institutions because their families or communities cannot cope with the difficulty, shame, fears and anxieties of having a mentally ill person at home. These organisations are also working with governments to improve policies and services, with the media to build awareness and with families and communities to accept them in their families. And there are organisations like Caregiver Saathi (www.caregiversaathi.co.in) in Mumbai that has started to raise the issue of care for care providers.
I wonder, though, whether as leaders of a country, organisations, businesses or education, ‘care’ is a word that comes to our minds when we think of development, growth, progress and achievement. The major indicators of health care are of disease, infrastructure and mortality and morbidity rates. However, care – which is perhaps the glue of every relationship, every family or society, is something we take for granted, to be provided by women, parents or children, communities and relatives. When we hear that it does not happen, when we hear that parents neglect children, children abandon parents, families expel their members suffering from illnesses, it makes us call them inhuman – and the split we make between ourselves and ‘them’ is that we are human and they are not, we don’t know what has made them inhuman and neither do we wish to learn, explore or understand ‘inhumanity’.
As care erodes in human relationships, it manifests in families, communities, society and a nation. I am not sure whether one can teach ‘caring’ – but as a process worker, here are some of my experiences and learning:
(a) Working with one’s internally held beliefs and values, particularly on gender, is a good way to explore how we hold ‘caring’ in our minds, and our internalised values on empowerment, power, impact and strength. It put me in touch with my own introjections of what I see as power, how therefore – for me – the image of an empowered man or woman may be a successful professional, a leader of an organisation or system, someone who thinks, analyses, acts and impacts. On the other hand, the image of the listener, the one who accepts, receives, holds, nurtures, feeds and nourishes – for example images of a mother at home, a very sensitive aunt/ uncle/ colleague/ friend/ neighbour, evokes warmth, love, joy, neediness and a space for belonging – but that’s not associated with power. Change can only begin with oneself, so as we lament the erosion of care in the world out there, one must begin with oneself.
(b) I think work with the mentally ill has far more implications for us socially than just about taking care of the mentally ill, providing the homeless with homes, helping the institutionalised return to their families or empowering families and neighbours to be more sensitive to them. The nature of work raises questions about who we are, our own individual and collective identities, and helps nature and foster the glue that binds us together.
(c) Speaking about the caregiver, their journeys, dilemmas, anxieties, fears, despair is so critical if we are to value caregiving in our own families. Today, when I speak to my mother about what she must have gone through so many years ago, and what it has left with, she often feels awkward. The underlying rationale is – I did what I had to do, what every daughter or child would do for their parents, why talk about it? Or perhaps a certain difficulty in speaking about schizophrenia – and I don’t know what fears and anxieties may lie there. The scars are deep and require continuous work of healing.
I am deeply grateful to all people who helped me understand and learn about mental health. My partner in crime Uma often is the receiving end of my angst with mental health professionals, but that rant I shall save for another article. But without my friends and partners like Uma, Sarbari, Sarbani, Ratnabali, Chandana, Barnali, Harleen, Laila – life would not have been as meaningful to me for sure.
This article was originally published on LinkedIn Pulse
About The Author
Roop Sen is a strategist, researcher and process worker, working passionately with diverse groups including women and children in situations of violence and exploitation as well as international organizations and corporate. His core competency lies in the domain of trafficking, protection, migration and gender. Roop sen, is a partner at Change Mantras, co-founder of Sanjog and also on the advisory board of Caregiver Saathi.