Posted by Mrs X with Rajeshwari of Roshni Action for Mental Illness India
I am Mrs X, mother and caregiver to D.
It all began, when she was doing her graduation. One day, D returned from college and became silent. Her mood was off and she felt low. Gradually, D stopped going to college. As a concerned mother, I met her friends and lecturers. Then for some time, things seemed okay.
One day, D told me that she is having some kind of fear. She could hear voices and irrelevant talk. I had never heard of such things before. As a pious mother, I took her to a Pandit [priest] and got a Puja [act of worship] done. The Pandit gave a thread that I tied around her wrist. For some time, D was normal. But soon, she became irritable and violent. I was helpless and didn’t know what to do. I could do little but consult our neighbourhood doctor family. They suggested that I should immediately get in touch with a psychiatrist. Hailing from a middle class family, I could not afford to take D to a private hospital. Initially, I took her to our family doctor who prescribed sedatives. Then, finally we went to Dr Ram Manohar Lohia Hospital.
The diagnosis was schizophrenia. The treatment and medication began thereafter. On the doctor’s advice, I joined the NGO Roshni Action for Mental Illness India, a family support and advocacy group of family caregivers. The NGO held meetings at the hospital to guide us, the caregivers. I slowly became positive. I learnt about a lot of things related to schizophrenia, along with medication and handling my daughter. For one year, D went to a Day Care Centre from 10 am – 5 pm every weekday. It helped her regain her self-confidence and make friends. She learned to take medicines and accept her problems. This also gave me much needed relief as a caregiver.
15 years have gone since her diagnosis. It has been a lonely journey. I have never got support from D’s father. Till date, he has not accepted that D has a problem. He still thinks she pretends.
D is doing an office management course from another NGO near our house. She has been managing quite well. But with the pandemic, I became anxious. Thankfully, the NGO informed her about the lockdown. She was given instructions about hand-washing and wearing masks.
In the beginning of the lockdown, D was dull. She was again gripped with fear and looked worried. How would she continue and complete her course? D was becoming slow and stopped listening to me. Again the NGO Madam from Roshni came to our rescue. The easiest and quickest way to seek help from Madam is to dial her mobile number.
Madam counselled both D and me separately. She explained D’s situation and told me how to motivate and keep her in a positive frame of mind. Then, I realised that D was upset as her routine was disturbed and she was 24 hours at home without stepping out. I began to appreciate her for whatever little she did.
Gradually, D’s response and attitude changed. She began to help me with house work – preparing breakfast, lunch and washing her own clothes. With the maid not turning up, D took up the task of dusting, cleaning. Soon she was comfortable doing her bit. On and off, I appreciate her. Often, I give her a surprise gift (I keep a stock of knick-knacks like small trinket etc. in my cupboard) or just cook up a dish using a new recipe.
D has realised that she has to be home until she gets a call from her training centre. Over the years, medication has helped. Time to time, the dosage has varied. I am happy and proud of my daughter. Now, she is looking for a job. I am confident that she will stand on her own feet and will be able to lead a life of dignity.
Madam asked me to write about our journey so far. I am very thankful to her, as most of my learning is from Roshni. I am confident that our identities will remain confidential and that is the reason I agreed to share our story.
I feel awareness, early intervention through family doctor helps remove stigma. Mental illness is treatable. I hope this story will make a difference to the readers.
Cover image and illustrations: LV Team
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