CARING FOR CAREGIVERS

Seema Jain

I AM 53 now and have been taking care of my younger sister, who is a patient of schizophrenia, coupled with low IQ (<66), for nearly 30 years now.

Ever since her childhood, there were behavioural and social adaptability issues. As we lived in Mansa (Punjab), a small town, there was not much awareness about mental health issues four decades back. Our family, too, did not realise that she was a specially-abled child. Since she was the youngest of four sisters, her behaviour or delayed milestones were often attributed to her being a pampered child. Whenever there were problems in school, my mother would say, “Seedhi hai (she is a simpleton)”, and change her school.

Finally, in Class IX, she was sent to a school in Modinagar, Ghaziabad. She lived in a hostel run by the Brahma Kumaris. Teachers and the hostel warden there flagged concerns about her intellectual disability.

After Class X, when she returned home, her problems aggravated. She would often become hyper and violent. We sought medical opinion. In 1995, we brought her to the PGIMER, Chandigarh, where in March ’96 she was diagnosed with schizophrenia and had to be admitted for two months. Since then, she has been admitted there 11 times, her stay varying between two and five months.

My sister’s diagnosis totally changed my life. I had just started working after finishing MSc (botany) but had to drop my intended career plans, as there was no one to look after her. My two elder sisters were married and my father passed away in 1997. My mother could not have looked after my sister alone.

I never married because of this reason. I have never been able to have a steady job despite the fact I am the only one earning. My other sisters and brothers-in-law also support us. I have changed jobs every time she has been hospitalised as getting frequent long leave is not possible.

In 2005, my sister fell down and fractured her spine. She could not walk and was bedridden for six months. As she needed physiotherapy, I did a diploma in yoga to take care of her. I also obtained a degree in naturopathy. Most caregivers learn by trial and error. I have come across many primary caregivers often opting to do some courses or diplomas that can help in taking better care of their patient.

After my father died, we moved to Kurukshetra in 2000 as it was comparatively easy to travel to Chandigarh for her monthly check-ups. We would travel in a bus and those journeys used to be hell as my sister would often get hyper and violent. Other passengers would laugh or stare and she would get more aggressive.

When these journeys became beyond me, in 2006, we moved to Panchkula where one of my sisters is married. Finding a house on rent was difficult as people hesitated because of my sister. I take yoga classes at clients’ homes to earn a living, that too only in the morning when my sister is asleep and evening when my other sister can come to look after her. It is a 24/7 job as hiring an attendant is quite costly.

Despite the challenges, I have been taking care of my sister single-handedly. She talks continuously, often hits hard or runs away from home. It has to be a constant vigil. Even to take her out for a walk is difficult because you need two to three persons to manage her.

My mother passed away in 2017. There is no respite even temporarily. There is no support and infrastructure at the government, institutional or societal level. There are no day-care or temporary rehabilitation centres where such patients can be left for short periods and be provided group therapy which can be beneficial for their treatment. There is no help, respite or any break for the primary caregivers. In 2012, my mental health took a toll. I would get suicidal thoughts after I realised that my troubles would only end with me. I was in therapy for nearly three years but eventually accepted the challenge as I had no other option.

Also, conditions in mental health institutions or asylums are not conducive for people to leave their loved ones without any worries. Not just the patient’s, the life of all family members is impacted permanently. The 24/7 care takes its toll, particularly on the primary caregiver, affecting their physical and mental well-being.

My sister is five years younger to me. During her lucid moments, she is very warm and loving, hugging me, praising me before others. She loves playing with children. She loves to eat samosas and rasgullas. I constantly worry about who will look after her if something happens to me. There are thousands of such families across India facing similar challenges and apprehensions. I have been working with various NGOs to find a solution. In 2013, I started my own NGO called Prabhat for the intellectually disabled and persons with mental disability. My aim is to open a home or hostel so that my sister and other such persons are able to find shelter.

— As told to Renu Sud Sinha

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