Sarah (not her real name) is a caregiver to her sister who was diagnosed with schizophrenia two years ago. Schizophrenia is a disorder of fragmented mental processes. Symptoms include: hallucinations, delusions, poverty of speech, social withdrawal, apathy, and lack of motivation.
My sister and I used to be very close. I would bring her with me to work and we will go to church together. But around December 2019, she started to reject going out with me. She would lock herself in our room and just want to be alone. She will also turn off the lights and fans, which was unusual as my family likes to keep the house windy and open. It was a sudden change, and I didn’t realise that these were the early symptoms of her isolating herself.
Her speech became more incoherent and she kept jumping across different conversation topics. She would tell me that the numbers on the clock were swirling or that colours looked weird. Sometimes, she would scream suddenly because she heard sounds.
We had quarrels when these symptoms appeared. I didn’t understand what was going on in her head and her total change in behaviour made me feel like I had lost a sister.
In April 2020, her behaviour became more violent and her language more vulgar. She would leave food around the house, saying that it was poisonous and accusing my family of trying to harm her. My mum confided in her close friends who advised her to seek help. Initially, my dad thought that my sister was putting up an act. But after talking to doctors, we realised that she had a mental condition.
We first sought professional help at a polyclinic in June. They referred us to National University Hospital, where we met a psychiatrist. It was there that they suggested my mum sign up for CAL’s Caregivers-to-Caregivers Training Programme (C2C-PMHI). It was also very timely that I happened to receive an email from my school about CAL’s Caregivers-to-Caregivers Programme for Young Caregivers (C2C-YCG) . As my mum was already in the programme, I thought it would be useful for me to pick up the skills and learn how to care for my sister.
I was quite afraid of my sister because I didn’t understand what this mental condition was and it was all very new to me. I used to have the impression people with a mental condition were dangerous and feared that I might get harmed if they got violent. Going through the course helped me understand my sister’s circumstances. Now I know that like our bodies, our minds can also fall sick. I try to engage my sister as though she is still her old self, but with more understanding and patience if she doesn’t respond the way she used to.
I also realised how important taking care of myself as a caregiver is. If I don’t care about my rest and mental space, if I’m just all about her needs and being there for her, I can get burnt out and this will affect caring for her. To be an effective caregiver, I have to be well-rested and have my own time away too - be it journal, go for a walk, or have a community of people whom I can walk this journey with.
My mum and I also often share what we observe about my sister. Whenever she shares with the family that she’s tired, we would help one another along. She had broken down a few times at the start, and my dad comforted her, saying that this is a marathon and that the whole family is in this together. That reminder helped us get through that period much more easily.
Extending Help to Others
After completing the C2C-YCG Course in September 2020, I decided to volunteer with CAL as a volunteer trainer. I thought, if I could play a small role in raising awareness amongst the youth, then ‘why not?’. As a caregiver, I wanted to share my journey with others and combine it with what CAL is teaching.
So I went for the Train-the-Trainer (TTT) programme conducted by Karen, Wei Jian and Xinru, who are programme managers in CAL. On top of using roleplay to run through the C2C programme materials, they also equipped us with presentation and facilitation skills. What I am most appreciative of is their constant care and concern – they are always checking in with me and my family.
I recall that while going through the C2C-YCG course, I felt heartened to see so many people who are not direct caregivers but simply interested in finding out more. It was touching to see more youths wanting to be more aware of mental conditions and understand how they can be a caregiver if they meet someone with these conditions.
Love and Acceptance
To other caregivers, I hope they have lots of patience, love and understanding.
I remember watching the movie, Shutter Island, and having these questions pop into my mind: “What if one day my sister never gets well? Can I still love her as she is now?” It made me think about seeing this as a reference point and just loving her as she is. If she gets completely well, that’s great. If not, I will learn to accept her and love her. I’m always reminding her that my family and I love her, and that she’s always accepted and welcomed.
Earlier this year, my sister’s condition stabilised and she started hanging out with the family again. Her medication was working well and she could communicate with us. For me, that was a significant moment. I was very happy to know that because she can hear us and talk to us, her mind is more free and relaxed. It was about celebrating little wins like this through the ups and downs.
To end off, I’m very thankful for the people who have been supporting my mum, and my friends who are so sweet to always ask how my sister is. Just knowing that they don’t judge and that their hearts are for my family is a huge support. I hope that more families can experience this as well - this privilege to have people who love them and their loved ones, and to be there for them.