When one is a caregiver to a parent with schizophrenia: A personal account

“Acceptance of mental illness by the family is a must. Non-acceptance traumatises children,” says Diksha, whose mother lived with schizophrenia.

Mother was diagnosed with schizophrenia. I didn’t even know the word, had never heard it and didn’t even know how to pronounce it. But Schizophrenia discreetly entered our lives way back in 2007-2008.

I was a kid then: 7-8 years old. So it was tough to even know what was happening. She would randomly make stories. Once I returned from school after an examination and she said, “I have told your friends’ mothers that their sons teased you.”

I was simply aghast. Both my friends were a year older than me and lived nearby. No such incident had ever happened. So I just yelled at her for telling a lie and went to my room. But it did not stop there. She continued making up stories, about my friends, my sister’s friends and my father’s colleagues. She would tell my father that she could hear voices of what he did in office.

There were days when she didn’t get dressed. Then there were days when she became hysterical, shouted at me and my sister and fought with my father. All this kept happening for nearly two-three years. My elder sister and father were unable to comprehend what was happening to my mother.

Read more: Let them not mourn the sunsets: Ensuring a productive life with Schizophrenia

One morning, both my parents fought so badly that neighbours assembled and pacified them. I went to school but I was choked up. During the morning assembly when everybody had closed their eyes and prayers were recited, I sneaked out, went to the classroom, sat alone and cried and cried, questioning God why my family is so unhappy.

After 15-20 minutes when my classmates returned, I pretended I wasn’t well. I couldn’t confide in anyone. My emotions were dwarfed by the laughter and giggling of classmates and the thought of an emotional tsunami waiting at home.

Little support for caregivers

There are hardly any support groups for caregivers. It is generally forgotten that caregivers also need support and help. If you, as a caregiver, need to talk and are looking for a caregiver support group, you can contact the NGO and caregivers’ groups mentioned below:

Swayam Foundation Caregiver Support Group (Delhi-NCR):

Tel: +91 9818138404

Landline: 0120-4263783

Email: info@swayamfoundation.co.in


FACEmi Caregivers’ Support Group (Bangalore):

Tel: +91 9886031659, +91 9483063824, +91 9811775766

These are the memories I have from my childhood. Constantly living in uncertainty and fear.

When I was in class 8, Papa took her to a psychiatrist and her condition was diagnosed as schizophrenia. I had no idea about this illness. At that moment I just thought that my mother is unwell and under treatment. I was told not to disclose the name of the illness to anyone.

We used to live in a very small community so it was tough for us. We used to hide the truth. It was not a physical disability or a physical disorder that we could share. My sister and I began to avoid inviting our friends to our home. I was embarrassed and shameful, and dreaded imagining what my friends would think about us. I stopped interacting with my friends.

Later, I researched schizophrenia and when I understood what the word entails, I began to spend my time joining the dots about the reason for her illness.

Till now I have not found it.

Self blame

Sometimes I blamed myself as she wanted a boy and I was born, or I blamed my father as he failed to give her emotional support – she was and still is frightened of him. On other days I blamed genes – my uncle had it and was put in chains. I never met him but relatives had told me about him.

Neighbours and relatives did not know what we – me, my sister and my father were going through. To us, every day was a battle and the world did not know about it. Listening to her hallucinations, and delusory stories were like being roasted alive in a burning furnace.

Whenever my mother talked with neighbourhood aunties, they laughed and I merely watched them helplessly. I hated them for making fun of my mother. By then I was in college and understood it wasn’t my gentle, kind, beautiful mother speaking but her illness. Father was regularly taking her to a psychiatrist but it was not disclosed to relatives and neighbours.

My sister and I had no one except ourselves. We were each other’s parents and friends. My father was never the sort of person to provide us with emotional support. His responsibility finished with taking Mother to the hospital and getting her treated.

Schizophrenia – Some facts

Schizophrenia is a disorder of the brain in which the person loses touch with reality. Some of the common symptoms are: delusions, hallucinations, disorganised thoughts, trouble in communicating and behaviour, suspicious of other people, decreased self-care, social withdrawal, uncoordinated movements, flat gaze, lack of energy, unable to maintain relationships, mood swings and occasionally becoming violent.

Early signs of schizophrenia usually occur between the ages of 15 and 30. If one notices such changes in self or a loved one it is best to consult a psychiatrist.

Though there is no cure for schizophrenia, it can be managed with proper medication and care. Treatment and medications are to continue lifelong.

In short, there was no parent for us to look up to. Mother was there but not there. My father forgot to understand that his spouse needed emotional support along with medication and that we kids needed his honesty and words of encouragement to brave the world. Instead, we were made to live in shame and a traumatic environment.

The impact of childhood traumas began to surface at different phases in my life. I became a people pleaser. I began to pretend that everything was fine with me and my family. I yearned for acceptance as it made me feel that my existence was recognised.

Even now, when I go out with people, with friends, with my boyfriend, I feel that often I am doing things just to please them. My relationships do not last. I get a feeling that my friends do not understand me. And when the relationship breaks down, I doubt myself and feel that something is wrong with me.

Read more: Mental illness a ticking time bomb, say experts

All my life I had been emotionally dependent on my sister. Though she is three years older than me, she acted as my friend and mother. Emotionally, I was so dependent upon my sister that when she got married, I felt as if the sky had fallen upon me. I was happy for her but unhappy within. She was my entire world. Suddenly, I felt alone and lonely, though the person she married was known to me and I was quite attached to him.

Caregiver to her mother Diksha Sachan
Diksha Sachan, caregiver to her mother who suffers from schizophrenia: “When I was in class 8, Papa took her to a psychiatrist and her condition was diagnosed as schizophrenia. I had no idea about this illness. At that moment I just thought that my mother is unwell and under treatment. I was told not to disclose the name of the illness to anyone.” Pic courtesy: Diksha Sachan

But of course, we all know that things change after marriage. I felt as if a part of me had been cut off. While doing marriage shopping in Chandni Chowk, Delhi, I broke down in the middle of the road. Everybody asked me if I was not happy for my sister. I couldn’t explain to them my pain, fear and the thought of me alone, acting as mother to my mother. Everybody misunderstood me.

After her wedding, I decided to rediscover myself. I was working in an IT company and had money so I decided to go on a trip to re-invent myself. In 2018 I went on my first solo trip. It helped. It made me see that people do talk about schizophrenia and that I need not be so ashamed or embarrassed about it. It was therapeutic because a new landscape, meeting new people, and new surroundings made me change my lens.

Rediscovering myself

I gained confidence and decided to bring about changes in my own home. It was tough and I still have to muster the strength to talk to my father. Earlier, my sister was the bridge between us. Initially, he was reticent but now he has changed a bit and has begun to listen to me.

Childhood trauma and living a duplicate life took a toll on me. I could not create a world of my own; I was desperately emotionally dependent on my sister; I lost a sense of judgement; I entered into wrong relationships, and continuously looked for validation from other people. That self-love and self-acceptance were missing.

Now every month I go on a solo journey and go for some extreme sports. It infuses me with fresh perspective and strength to sail alone despite my anxiety and depression. Yes, I have been diagnosed with anxiety and depression and am under medication. But I have not succumbed to them.

I am a working professional. I have realised that there are so many different ways to live life. We cannot stick by certain rules told to us by our parents or by society. Solo travelling has made me realise that I have to take care of myself. Today, I am my enemy and friend.

I have had my share of true happiness. I know what it’s like to be at the mountain top and see a beautiful sunset. It is that moment that I want to capture and preserve. Strangers have become my friends. I confide in them without any shame or embarrassment. I tell them the truth – the truth that I have always hidden because of being labelled and stigmatised by society.

Now, I even tell my father not to hide the illness. After all, aren’t mental health issues like any other illness? Do we hide telling about illnesses like diabetes or liver damage? We do not. Then why such hush-hush about mental illness? Why stigmatise the family, and the caregivers?

Acceptance of mental illness by the family is a must. Non-acceptance traumatises children, the way it happened to me.

Let me conclude by saying that if people around you are feeling embarrassed and judging you because of the mental illness of your loved one, then they genuinely are not your friends because genuine friends would not judge you if they truly love you!

As told by Diksha Sachan to Geeta Lal Sahai

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