What is it Like When Your Loved One has Dementia?
28 October 2019, Personal Account by Sean Jet Lim while interviewing Iris, 60, who is the main caretaker of her brother suffering from dementia
As I arrived at an HDB void deck on a Tuesday late afternoon, I feel heightened apprehension at the task before me.
It’s not because I am interviewing someone prominent or someone controversial, I was just meeting a normal lady in her late 60s, who wishes to be known as Aunty Iris.
My unease stems from meeting Aunty Iris to touch on a sensitive issue — how she copes with taking care of her two elder brothers who have Alzheimer’s disease.
The eldest brother had passed away in recent years whereas the other is currently living alone.
For those who do not know, Alzheimer’s disease is a type of dementia that causes problems with memory, thinking, and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.
Juggling work and family
As we made small polite talks at a nearby coffee shop, I realized that despite nearing 70 years of age, she is still very positive and healthy.
Every morning at 6.30 am, she will take a 30 minutes walk to visit her brother before she leaves for work. And after work, she will buy dinner and sometimes cigarettes because her brother will feel “pekcek” without it.
Aunty Iris had to do these every day to slowly perfect the art of caretaking her brother.
Problems that arose with the neighbors
While taking care of her brother, she described how she can occasionally find lots of rubbish in his house.
"Each time I found rubbish lying around I will ask him: 'Can I throw all these away?'
"No don’t throw them away! Don’t throw them away!"
"I had no choice but to secretly throw them away while he is showering. Haha the funny thing is when he finishes showering, he can’t remember all those rubbish”
Hearing how her brother will go around the neighborhood to collect things, I further asked if he had caused any issues with the neighbors. She tells me that for the initial two years, there were really a lot of problems with his neighbors. There were even a few cases whereby the police had to step in to settle them. Whenever her brother sees things lying around the corridors, he will bring them home. This caused the neighbors to be late for school and work because they couldn't find their shoes in the morning.
Those who did not know her brother had dementia, went on to accuse him of stealing.
So in an attempt to resolve these issues, Aunty Iris had to go around looking for the owners of the shoes and apologize. There are also times when Aunty Iris’ brother could not sleep and went on to create a ruckus in the middle of the night. The police had to be called in but fortunately, they were very understanding and everything was settled peacefully.
Receiving help from the Government and Social Workers
When asked if the government has done enough to support her family. Aunty Iris gave me an innocent smile and expressed how grateful she has been to the government and social workers.
“Actually the government and social workers have done enough to help us. But you need to approach them for help if not they will not know the problems you are facing.”
If not for the help she had received, medical bills would have been unbearable. Once, she could not send her brother for his checkups as she was busy with work. The social workers realized something was amiss when her brother did not turn up for his check-up. After finding out about her circumstances, they made a special arrangement to pick up her brother instead.
However, she pointed out that she did not leave her brother under the care of nursing homes because private care centers are still expensive (approximately $600 a month after subsidies).
Selfless and caring lady
As the interview winds down to its conclusion and we say our goodbyes, Aunty Iris’ husband suddenly called her. It was time for her to head back home for dinner.
Looking at her back from afar, I thought to myself how tough it was for Aunty Iris to take care of both her brothers.
She was a selfless role model who puts other’s wellbeing ahead of her’s. Even her husband does not know that she has been secretly visiting her brothers every morning.
