After 10 years in Singapore, I moved back to care for my Mum with dementia. I did not realize how difficult it was going to be. I was constantly breaking down. It was through this sheer desperation and helplessness, that Caring With You (CWY) was born.
By Diedre Low
Diedre Low, Co-founder of Caring With You, a Malaysian based dementia enrichment centre shares her story with us.
I was in Singapore for about 10 years and I never knew Mum’s health was deteriorating. I wasn’t home enough to see her cognitive functions changing. My sister would usually tell me “Aiyah, Mum went to the market and forgot the chicken” or “Mum lost her car keys again” and we concluded that it was just old age. Without education on Dementia, that was our first thought.
When I moved back to Malaysia, as a carer, I felt a sense of helplessness. Experiencing the ups and downs through this journey, constantly hovering over my Mum and coming to terms that she now has a fuzzy brain and is disoriented. Mum was going through this from 2014 – 2016. I had just left my life and job at Singapore to move back to help my sister with Mum. I didn’t realize how unbelievably difficult it was going to be, the worst stress anyone could have gone through. I was constantly breaking down.
“What was their magic trick? It was so simple. They told me inside my Mum is a person who wants to feel useful and to feel included, but we were ignoring that part of her.”
I was blessed to have had good friends who felt “I don’t believe a person with Dementia can destroy a person who is level-headed and strong like you” and they planned to take me on a road trip to see first-hand how other people with Dementia are coping.
They took me away to Perth for 2 weeks. My friends had contacted Dementia Australia, which at that time was Alzheimer’s Disease Australia and we went home-hopping. They took me to visit home after home, some were residential homes and some were day care homes but all were specifically for Dementia. To show me that persons with dementia are just like anyone else in the community. They can be happy and not just rude and aggressive like Mum. I needed to see this, to see the other side.
What was their magic trick? It was so simple. They told me inside my Mum is a person who wants to feel useful and to feel included, but we were ignoring that part of her. We need to give them social interaction and engagement, using the person-centered-care approach. I thought “Okay, this is doable! I have learnt it now and I’ll do it one-on-one with Mum”. So I came back home and did just that. And I failed miserably. The problem was it was one-on-one, there was no social element to it. The interaction and engagement needs to be meaningful. Together with my best friend Helen Kok, who spearheaded my Dementia journey and provided motivational financial support to me as well as being my Dementia research buddy, we both leased a bungalow and co-founded Caring With You (CWY). We carry out meaningful and well-planned activities which engage with their cognitive side
“Looking back, Mum could have had a better quality of life especially at the beginning but we didn’t know about Dementia, we weren’t educated about this. There is a stigma attached to the condition. It has improved a lot in recent years but back then, we just didn’t know.”
My sister and I were always very close. We had some major differences but looking back, it was similar to what many families who come to CWY usually go through with their own siblings. We understood the intricacies and silent language within families. We tell families they need stimulation or else they will deteriorate and many families think “Why bother? Why spend money when it is a declining disease and you can’t do more for them?”.
It took me a long time to show my sister “Look at Mum, she is happier and healthier because of the social engagement, she feels she is in a community where she can talk freely about anything she wants”
Mum is now 87 years old. In hindsight, I would guess she first started showing signs of Dementia in 2011 when she was 76 years old. My dad passed away 3 years before this and she must have gone through a bad patch with loneliness and depression but we were too busy with our own lives. We didn’t notice it, we felt she was self-dependent and she will be alright. She went through depression and it got to her brain and from that point, it just went downhill.
Looking back, Mum could have had a better quality of life especially at the beginning but we didn’t know about Dementia, we weren’t educated about this. There is a stigma attached to it, though it has improved a lot in recent years but back then, we just didn’t know.
Diedre Low is co-founder of Caring With You and as a caregiver herself, she understands the frustration, pain and mental agony which goes with understanding this illness and the long-term effects it has on each member of the family. Reach out to find out more about how you can get support here.