Je Suis Nightingale

The journey of caring for a loved one living with mental illness is a bittersweet one. A few carers share their personal experiences

- ABHIRAM PATHAK

Amrit Bakhshy, 83

“DON’T eat junk food all the time,” I tell her. “Don’t eat ice cream before dinner.” I nag her like any other doting parent. But then unlike other parents I don’t stop my daughter. What else can I do? These are the little joys my daughter Richa has.

Big joys, sadly, I cannot give her. She can’t get married, can’t have children, can’t live a ‘normal’ life. But if going to a cafeteria—even at the hospital—feels like a fun outing to her, I take her. These are the joys I try to give.

She clings to me. I tell her to make friends, to engage with others, but she’s very possessive. I know that after me, she's going to have a hard time. She’s very dependent on me. So I try to give her whatever little joys I can manage.

If that means eating ice cream before dinner or going to a restaurant, I let her. I want her to be happy while I’m there.

My daughter is 53 now, she has been living with paranoid schizophrenia for most of her life. I've been her primary caregiver for nearly 34 years. We live together at the campus of the Schizophrenia Awareness Association (SAA) in Pune. I remember when we first came to the SAA. We were the very first patients there. The SAA had been set up in the outskirts of Pune, away from the buzz of the main city. It has been operational since 1997 for persons with mental illness and their families. The SAA is run and managed by user survivors, family caregivers and volunteers jointly and does not have a proprietary style of functioning. It’s a community for those affected by mental illness in anyway.

I’d suggested to the then-president that Richa and I start a small project of making tea and coffee for everyone. And so we did. She even ended up teaching English at the centre for a while.