Siblings play a precious role in the lives of persons with special needs. The MINDS Siblings programme, or MINDSibs, creates a community of care for siblings of persons with special needs in their journey of caring for their siblings with special needs. Learn more about the joys and struggles of caring for a sibling with special needs through stories from the MINDSibs community.
2021 marks my fourth year of stepping into the role as a primary caregiver to my brother with special needs. I took over the responsibility from my mother who had suffered a stroke in 2018, and I realised that I never truly knew my brother as I was busy working to support my family. There and then, I decided that I needed to spend more time with him to understand who he is as a person with special needs.
The last three years have been very challenging. My brother is not able to express himself verbally, and I struggled to understand him. It was also difficult to encourage him to warm up to me while helping him adjust to my new role as his primary caregiver. I also had to accept that I would no longer enjoy the independent and self-focused lifestyle I was used to.
I started to bring my brother with me wherever I went so that he would be able to experience “everyday life” with his sister. We would go to hawker centres for our meals, visit the Singapore Explorer, take short walks around the estate, and take part in a variety of routine activities together. While these might sound mundane, they were memorable for both of us. When Phase 2 restrictions eased further in late 2020, I was informed that he still could not return to the previous centre he was enrolled in. That set off a series of frustrations as I had no one to turn to for help in finding another centre for him. At the same time, I had to continue working. I turned to a few agencies for help but to no avail.
Foremost in my mind now is to draw up respective plans for our future, especially in areas like medical assistance, affordable HDB housing (similar to senior Community Care apartments), and finances as we age. I believe that medical assistance and housing for ageing single caregivers and their siblings with special needs require more attention from the government. I hope the relevant authorities will look into this aspect and provide the necessary resources for our aging years. At this moment, life has almost settled into a new normal for us. I read that people with special needs have a short life span. I learned not to worry about how long my brother will live and not to worry about tomorrow; for tomorrow will care for its own. We will continue to live one meaningful day at a time.