Rangashri Kishore, Head Librarian at Krea University, Chittoor, who was caregiver to her brother for 35 years after he spiralled into depression and aggression when he did not get a seat in the University, talks about the family's caregiver challenges and the strength she acquired by helping others.
You have been a caregiver to your brother for 35 years. Could you give us a little background about your brother?
I will share it in the form of a excerpt of a poem that I wrote on his life:
My dear brother
…Like all other peers he then grew up to be a teen
Showing off his skills while constantly combing hair in between.
As a college student he excelled in Maths and Science
To the envy of many others who exhibited defiance.
As he scored 95.5 % to join the Masters Degree
shockingly the University refused to admit and agree.
It was the year when there was strong opposition
to protest against merit but give importance to reservation.
He was an ordinary citizen without any caste certificate
We were perplexed by the system wondering how to authenticate
The result was the denial of a seat in the University
Triggering a mindset of hopelessness in him due to adversity.
He soon exhibited symptoms of severe aggression
Directed towards my parents periodically going into depression.
As we watched him struggle with his uncontrolled behavior
While my younger brother and I anxiously waited for a savior
He did stabilize to finish his Post Graduation a year after
But the damage to his mind made the family live in fear sans laughter.
There were episodes of him running away
From reality and expectations of the world every day.
The battle of violence and endless trips to rehabilitation.
Continued with some hope, some despair and some humiliation.
The never ending struggle has gone on for many years
Waiting in the hope that someday we will have no tears.
At 54 he while still in the hospital under treatment
Hoping against hope that one day we will see his betterment.
But I sadly lost my brother on 24th April 2019 to this illness of the mind
but found many brothers along the way who have helped and been kind
Let this journey of his life be a lesson to learn for our nation
reminding the loss of a brilliant mind due to discrimination.
I hope and wish that nothing in future will stop anyone to learn
making all of us to respect those who deserve to earn.
What were some of your biggest challenges as a caregiver?
The biggest challenge as a caregiver was to cope with his behaviour especially whenever he became violent. I was also young, may be 22 years, when I observed the problems my parents were going through. He would direct all his anger and frustration towards my parents and later he would realize and feel sorry. But during the peak of his psychotic phase it would be unbearable for us to deal with his violence. I have seen my mother and father being beaten regularly if they did not buy whatever he demanded. My father was the only earning member and because of my brother’s condition his physical health also started deteriorating.
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Once I established the first half way home, I had him shifted there but he ran away from there and then I had no choice but had to shift him to Tambaram in Chennai in a long term care centre where he lived for nine years. Keeping a family member away from home to provide long term care and support all along is a big drain on the financial resources as well asn emotional drain on the family caregivers. Each time he ran away or if he had to be shifted from one rehab centre to another because he was not ready to adjust - it was an extremely challenging aspect of our journey. For example, he went missing in 2017 and we were searching for him in Bangalore. Due to my work in the community libraries in Haryana the IPS officers who were from Karnataka cadre assisted me in tracing him through their contacts. He was found at the Bangalore railway station after wandering homeless for many days. After that I went and got him treated in hospital and admitted him in a long term centre in Madurai. On 24 April 2019 after a long drawn battle he passed away in Madurai in a hospital.
Thirty-five years of caregiving is a long time. What were some of your major lessons that you learnt from this journey?
The main lesson was to accept that the person will need help and he or she is not behaving abnormally deliberately. Seek help from professionals. Talk about it openly as it helps. Once you talk about your relative’s condition you will make the listener open up stating they too know a person with a similar condition.
Self-help is the best help. Depending on or waiting for help from outsiders or neighbours is wasting time. Educate oneself about the illness by talking to professionals. Reach out to help others like yourself. It is therapeutic. Your experience may help other such newly diagnosed patients and families.
Caregiving can be stressful. How did you find moments of relaxation?
I got enrolled in Masters programme, got a lot of support from my family like my husband, Mr M.C. Kishore, my mother and my younger brother, Malur Narayan, who though living abroad, supported in caring financially and helped him to get jobs through his networks. My job as full time librarian helped keep me busy and occupied. I also set up a rural library and resource centres for the poor and needy. Helping children to learn through story telling sessions in the community surrounding the University where I worked. These helped me also to become strong and got support from innumerable ways.
