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Submitted by PatientsEngage on 20 May 2017

"It is almost a miracle that my sister and I now behave like normal sisters in any other family -- fighting, sharing and laughing." A first person account of a sister caring for a sibling with schizophrenia.

The Beginning of Hope

When we came to SCARF, the Psychiatrist Dr. SK was the 10th doctor to whom we had come to in January 2014. We should have ideally met her some 16 years ago.

Our journey had been a long one, with highs and lows, trials and tribulations, sometimes even thorny. But the intrinsic belief that there was somewhere a recovery for my sister led me to strive for better options consistently.

My sister, having gone through both physical and mental violence by virtue of her illness as well as having been proclaimed mentally sick by everyone, I decided to chart out a recovery path all by myself, which is when SCARF (Schizophrenia Research Foundation) happened to us. We are so grateful to everyone at SCARF from the bottom of our hearts.

Continuous medication (treatment), residential care for 7 months and regular visits to the VTC (Vocational Training Centre), about 5 days a week -- all of these helped rehabilitate my sister. It was a moment of jubilation for all of us in the family.

Patience and learning to live without expectations gradually brought me to a state of meditation. Without the unstinted support of my aged mother for continuing with the treatment, I doubt if we could have progressed this much. I also feel that this entire process of treatment and medication rehabilitated us as well.

It is almost a miracle that my sister and I now behave like normal sisters in any other family -- fighting, sharing and laughing.

The VTC experience

Before the admission procedure at SCARF, we were informed in detail about the compliance procedures to which we always adhered and we still continue to do so. SCARF has only one slogan: Do not forget medication. It is a lifetime companion.. We were naturally new to Anna Nagar and we learnt the ropes gradually.

After the residential care, we were advised to come to the VTC 5 days a week. My sister’s refusal to visit the VTC led to heated arguments at home. I actually lost my cool and was compelled to be a little firm with my sister to make her see reason. The doctor’s suggestion that alternatively my sister will have to be carried by an ambulance for readmission at SCARF made her agree. Amidst all this tug of war, I picked up the art of coercing my sister to visit the VTC. I thought I would fail in this war of wills. But I focussed on my attitude and I said to myself that I will have to find a way to solve this issue. I tried everything with my sister to take her to the VTC -- coaxing, threatening and evenbegging, whichever worked at that point.

Baby steps towards independence

I explained my situation to the doctor and she also took a tough stand that compliance is compulsory. Slowly things were getting streamlined. Everyday I would drop my sister to the 3rd floor by stairs and in the evening, I would pick her up. We had to change two buses to reach the VTC. Our daily trips also enabled my sister to get familiar with the world outside after a gap of 14 long years. I would ask her to buy the bus tickets and then we would travel, sitting next to each other.

In the process, my sister was also gradually becoming dependent on me and I could understand that she was scared to sit alone without me. When we got inside the crowded bus, we would often get separated inside, and when she would turn towards me, I would always raise my hand in assurance. Often, when there was only a single seat available, I would ask her to sit, and gradually she was getting used to sitting in the bus without me next to her. At the VTC, when they saw me dropping my sister and picking her up on a daily basis, they advised us both to slowly get accustomed to going to the place independently. We needed my sister to develop the confidence of travelling alone.

As per this suggestion, I first left her at the bus terminus, asking her to proceed on her own.. She refused. But I forced her. I made her wear bright coloured dresses so that I could keep track of her from a distance. Subsequently, I stopped following her, and I stood at the terminus and observed her till she disappeared from sight. After 10 minutes, I used to call the VTC to enquire whether she had arrived. Then I boarded the bus back for home.

Gradually, I started leaving her at one bus stop and she had to travel without me in the second bus.After a week, I just left her at the first stop and she had to travel independently. She has now become totally independent.

Learning process for all

During this entire process, I also learnt that we have to be independent ourselves to make my sister independent. Clinging to unnecessary fears only aggravates the situation. When a mobile was
given to her after proper initiation, she called us to inform us about her arrival and departure. Technology helped connect us.

Now she has to get up early and take care of herself to reach on time at SCARF. This daily ritual of travelling to and from SCARF has also helped my sister become more alert and observant. She was taking her baby steps, and we had to hold her hand to guide her. In the process, I understood my role.

My sister also became active in handicraft work and was productive. Later, we put her into 2 months of yoga programme to reduce her body weight and improve her general health. Her eyesight also showed significant improvement. We were relieved with the overall improvement which is why her medicines were decreased.

My sister was also asked to do walking and breathing exercises which definitely boosted her mental health. A gloomy and despairing look was effectively replaced by smiles and laughter. This was a miracle for all of us.

I understood one thing. Proper treatment under proper supervision, obeying the rules, compliance with procedures, dedication and determination will definitely bring success in the efforts.

My sister now visits the VTC as a yoga teacher and we are so happy with her progress.

 

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