Facing the Unknown: What Happens to Us When Our Parents Are Gone?

18 June 2026

This morning as usual, after entering into the car which would take me to USM, I took out my phone to order food for my mum via GrabFood. In the middle of making the order, I received an unexpected whatsapp message from Cikgu Joe who is attached to Cerebral Palsy Association of Penang (CPAP), friendly to each and every CP individuals and also an advocate for OKU mainly CP. He is not a person that used to send or forward any general or greeting message to us, probably to others too.

I saw the whatsapp notification before clicking it to read the whole message. The notification was written as “Good morning.. Cheng Yoong”. Cheng Yoong’s an ex-pupil of CPAP. I could guessed it would be unpleasant news, most likely someone has just passed away. Was the letters of ‘Yoong’ will be followed with ‘s or a space which mean would it be his mum or Cheng Yoong himself? I know his mother who had been working at CPAP back in 2000s, while Cheng Yoong who’s a severely CP but intelligence guy worked at our CPAP’s shelter workshop. His mother would come to the shelter workshop to feed him and help whatever he needed during the break times. I used to see his mother carried him transferring between her car and his wheelchair, every morning and evening. His speech’s hard to be understood.

Then I clicked the whatsapp message to read further. What a relief even though feel sad when I learned that it was Cheng Yoong who has passed away yesterday. I have been told that he was 56 years old. You may think what la Chin Chin, such a hard-hearted saying that it is a relief when her friend passed away at such considering a young age. I apologise for my cruel thought, but it is truly from me, perhaps it is my depression talk, I know that his mother or caregiver may have a great grief for losing him, would be much more greater, compare the other parents losing their able-bodied adult child or mild disabled adult child. Because of the strong bonding as the parents may take care, carry, bath, feed their child daily for 30, 40 or 50 years or even more.

I still remember one of my conversation with Cikgu Joe during the camp at CPAP when I was just 19 or 20 years old. I said that I hope I would passed away before my mum as I am required assistance in some basic daily activities. While, he replied that there are parents hope their disabled child would passed away before them.

Anyway the issue is not actually hoping the disabled adult child especially those with disability level range from moderate to severe one. The real problem is where those physically disabled, intellectual disabled, visually disabled and psychosocially disabled can go or who will look after them when their parents or main carers no longer able or struggle to continue taking care them due to old age, illness and then died or even have a sudden death. These parents may request their able-bodied children to take care their disabled siblings when they are no longer around in future. However, would it be a reasonable request for the able-bodied children to take such additional, big, and long-term responsibility to take care their disabled sibling beside their expected responsibilities towards themselves and their own families? In fact, the welfare of these able-bodied siblings have been overlooked. It can be say that there is no social support for them especially during their childhood or growing-up period, compare to the disabled child and also the parents. They actually have sacrificed themselves since early of their lives as their parents need to spend more time and even more resource for their disabled brother or sister. They had less opportunities to go out have fun with family, compared their peers, because the environment is not accessible for their disabled siblings. They may have became mature earlier to share responsibilities with their parents in taking their disabled siblings with special need.

The problem of where those adults with moderate to severe physical disabilities, intellectual disabilities, visually disabilities or psychosocial disabilities can go or who can look after their special needs, should not be treated just as the family problem only. It should be seen as a societal problem. Society should play their roles come out with ideas, do something to help these disabled adults and their families. Yes, there is the Penang Cheshire Home which provide accommodation for some disabled adults beside run a shelter workshop for the disabled. Many residents there are our CPAP’s ex-pupils, and there may be few other organisations provide such accommodation for the disabled. However, how many percentage of these disabled adults can be taken in? And the types of accommodation provided mostly are a dorm or a room shared by a number of residents, not a single bed room. Where is the dignity and privacy for those adults especially those with average mental capability to share a room with several people for day in and day out, mostly throughout the rest of their lives? How about if there is a married couple with moderate to severe disability.

I am not talking about myself. I thank that I am fortunate to have the opportunities to get a good education and have a good job with good salary. I may afford either to hire a maid to stay in my house or to move into a nursing home in future. How about the other disabled who did not have access to education in the first place, which causes them unemployed. There is a high number of disabled people being unemployed due to societal and environmental barriers, and they are living poor. Moreover, those adults with moderate to severe disabilities. They have to spend most time at home. I was being told that Cheng Yoong had spent his last few years at home 24/7, mostly in his bed. His elderly mother herself have being ill for sometime and required to be taken care too. Thanks that his mother’s sister has a kind-hearted taking care both of them beside rushing to work earning some money. So, what will be happened to the rest of moderate to severe disabled adults when their parents no longer able to take care them?

Actually our elderly parents should have the opportunity to have rest and enjoy their golden age, go visit places that they are dreamed for with their life partner and friends, or spend time participating in activities or doing things as they wish, just like the other elderly parents, before they lost their own ability and leave this world forever. I do hope that my mum could spend more time for herself, rather than feel a must to be at home for me every single day. I also often hope that my mum will have more opportunities spending enjoyable time with my brother without my present, as I might have taken lot of my mum time from my brother especially during our childhood and growing-up period.

Rest in peace Cheng Yoong. I believe there is no more pain, stiffness, loneliness, frustration, tear, worry in you now as you enjoy the eternity life, spending all time being together with our Heavenly Father.

Heavenly Father, may You will comfort Cheng Yoong’s mother and his aunty during this difficult time. May You send people and friends to give them continuous moral support. Amen.