It’s always been just me and Mum, for as long as I remember.
My father passed away when I was just two and a half years old, and fearing that his family would take me away, Mum cut us off from them completely.
Mum worked as a cleaner to keep us going. It was hard work, and I saw how tired she got.
She’s now 83, and it’s the least I can do to take care of her the way she took care of me. Easy to say, but not easy to do. It certainly hasn’t been a bed of roses and there are things that have fallen to the side along the way.
Growing up, she was a ‘tough love’ sort of mother, and I was a rebel. Needless to say, our relationship was rocky at times.
Looking at things now, I find it amusing how our roles have reversed. I feel I’ve become the parent, and she does exactly what she used to tell me not to do. Life is funny sometimes.
The Early Signs
Mum first started exhibiting signs of dementia way back in 2008, but at the time I thought she was just being difficult. I was engaged to be married, and Mum started acting strangely, getting on our nerves by accusing us of things that were not true and getting upset.
My fiancé and I were running a food stall, and Mum was angry that we chose a location relatively far away from where we lived, accusing me of wanting to get away from her and making it hard for her to visit.
This persisted even when I explained that it was important for us to be near my fiance’s house, as her mother was helping with the cooking of the sauces. She continued to be unhappy and it was hard for us to deal with her emotions while running the business.
The stress of it all proved too much and we called off the wedding the following year.
My ex-fiance suggested that Mum could have dementia, so I looked it up on the internet. When I read some of the stories, it felt like I was reading about my own life.
Letting It Sink In
I was at a loss. I called the dementia hotline and the person answering the phone kept asking me to bring her in for a check-up.
Once again, easy to say, not easy to do. Mum can be stubborn, and she refused to go.
Life took a turn in 2011 when I was caught trafficking drugs and sentenced to 12.5 years in prison. It was a challenging time, my biggest fear being that Mum would pass away while I was inside.
I was released after 8.5 years for good behavior and walked out of the gates in July 2019. Finally, I could return home and be there for Mum when she needed me.
Mum and two friends came to pick me up from Changi Prison and we headed for lunch. We walked around, I picked up some toiletries, and we headed to the home which I had not seen for years. I was picturing having a nice long shower and finally sleeping on a comfortable bed!
My joy was short-lived. I opened the door to my flat and my jaw dropped. Mum had been hoarding. The entire house was stuffed with all sorts of rubbish. My room was in a terrible state, piled to the ceiling with all sorts of junk and covered in a thick layer of dust. Where was I supposed to sleep?
My friend’s wife knowing the situation, kindly offered to bring Mum out for a drink. We must have filled over 10 garbage bags that day. When they returned, I expected a showdown when Mum realised that all her stuff was gone.
Instead, she walked around and said, “Wow, the house feels so clean and spacious now that you are back.”
And that was when I knew her dementia had progressed.
Another Uphill Struggle
I desperately wanted to get back to ‘regular’ life and make up for the time I had lost, to get a good job, perhaps get married, and start my own family.
I signed up for a course in Advanced Certificate in Workplace Safety and Health in 2020, thinking it was a path I wanted to pursue. I also met Arya (not her real name) in 2021. We fell in love and were married three months after we met. I was happy and hopeful about my chance to start life afresh.
We decided to stay with Mum, so I could care for her. But I soon found myself being torn between the two loves of my life and within a year, the marriage fell apart.
I slipped into a dark depression. Friends told me I wasn’t myself, and I would lose my temper over small things.
I felt stuck. I felt like I had come out of one prison and entered another. Everything that I did had to be planned around my mum. I couldn’t decide to take a spontaneous trip as my friends could. My marriage was gone and I was not able to take on a full-time job as I didn’t feel safe leaving Mum alone. On top of that, I felt people expected me to be everything to everyone, and to not have emotions. Are caregivers not allowed to get angry? When things get trying, are we still expected to remain calm?
Fortunately, in prison I learned that one should not struggle alone, to put pride aside and be open to assistance. So I walked into a Family Service Centre and said, “Hello, I need help.”
An Oasis of Support
In May this year, I saw a poster at my lift lobby calling for volunteers to sign up as Community Risk Screeners to help check on residents as part of a mental health outreach programme and decided to sign up.
It turned out to be a great decision. By volunteering, I learned a great deal about mental health – and most importantly, I heard about a place called Caregivers Alliance Limited that ran programmes for caregivers.
I didn’t know what to expect when I signed up for Caregivers-to-Caregivers Dementia training programme (C2C Dementia) – but it turned out to be the best thing I have done to help me in my caregiving journey. You know the feeling when you’re really thirsty and someone hands you a big glass of ice-cold Coke? That’s the feeling I got from attending C2C.
It was inspiring and comforting to see caregivers from all walks of life coming together to share stories. We are all from such different backgrounds, but we all speak the same language and there is so much mutual understanding. I felt like I had been wandering alone for so many years and had finally found my tribe – people who know what I’m experiencing without me having to explain, people who aren’t going to keep telling me to be patient, that she’s my mother and I should just suck it up.
The biggest takeaway from the course for me was that you cannot expect the person you’re caring for to change. A person with dementia is not going to get better, and in order for us to both be happier, I had to adjust my expectations.
I’ve found things to ground me and keep me sane. Religion is a major factor, and I’m now studying to be a Koranic teacher, God willing. Volunteering also gives me a sense of purpose. I share my stories at Club HEAL and with a support network, Reforming Support Group (RSG), for persons in recovery. I am also planning to sign up as a volunteer trainer with CAL to help other caregivers and advocate for mental health and caregiving.
Instead of seeing caregiving as a burden, I see it as an opportunity to be with my mum in her old age. Especially after spending almost a decade in prison, this is bonus time that I’ve been given with her.
And through this time spent, I now see the love she has for me. It’s not in what she says or the grand gestures, but in the little things. Like how she asks me, every single time, whether I’ve eaten, before she starts on her meal. Every night before I switch her bedroom light off, I’ll say to her ‘orang sayang Mak’ (*I love you Mum), where she’ll reply, ‘Mak tak sayang kau’ (I don’t love you) and she’ll give me a cheeky grin. Priceless.
My message to caregivers is – seek help if we need it. A person like me would never have been open to accepting help in the past. But I have learnt that no man is an island, and if giving help is a gift, so is receiving it with grace.