Daniel Lim has been caring for his 82-year-old father who suffers from dementia for the past 11 years. Photo: Joshua Lim
“Caregiving really is a 24/7 job,” said Daniel Lim, 39. “I don't care give, I care for them. What that really entails is like how a parent takes care of a child, except now I’m the one caring for my parents.”
The 39-year-old Project Consultant for the National Healthcare Group’s father was diagnosed with dementia in 2009. His mother was battling cancer during that time, and when his father started to forget the clinics they needed to go to, Daniel decided to get him checked as well.
That was when they discovered his dementia.
“My mum was going through chemo at the time, so my father acted as his patriarchal role and played down his own dementia,” said Daniel. “At that point of time there wasn’t enough resources to even educate us what dementia is all about.”
Daniel’s father was diagnosed with dementia while his mother was going through chemotherapy in 2009. Photo: Daniel Lim
DIFFICULT TIMES
The initial years were difficult for Daniel as he and his mother had to adapt to the fact that his father was changing. As an only child, he did not have anyone to relate to in terms of his emotional challenge because he did not have anyone to talk to. “The first three years of the experience was trying to recognise and trying to deal with it, that the s*** has hit the roof.”
Daniel spent the next four years coming to terms with his father’s dementia and living with it so that his family’s environment would eventually normalise.
Despite having been over a decade since the diagnosis, Daniel still faces difficulties in caring for his father.
“In an emotional setting, it's very hard to negotiate a conversation where I say, ‘daddy, I have to clean your genitals’. But in the dignity and pride he has, he would never allow me to do that,” said Daniel. “Everyone showers on a daily basis, but if I have to have that conversation with him daily, it becomes a lot trickier for me.”
Thankfully, however, his mother is normally able to hold that conversation much more easily.
Still, it is just one of the challenges Daniel faces. “When he has a bad day, all of us have a bad day,” said Daniel. “If dad isn’t feeling himself, he sometimes becomes more verbally abusive, and when this happens, we know it’s not him, it’s the dementia.”
The ongoing pandemic has also been hard on Daniel and his family. Prior to the pandemic, Daniel has always followed a routine for his father. His mother would wake his father up at eight in the morning to get ready for the day. The daily routines would help keep his father engaged.
“We’re all creatures of habit. When you do these habits, the neurons in your brain are firing, and that’s what keeps [dad] lucid and alive for a longer period of time,” said Daniel.
A friend of Daniel’s, Danny Tan, is also a caregiver. He would often take his 87-year-old mother with dementia to interact with her neighbours.
“Being socially connected to the community is very important for people with dementia so that they feel that they are still a part of this society,” said Danny. “It's one aspect of not allowing them to deteriorate further, to have social connections. Even for people like you and me, we need to meet friends, let alone people with dementia.”
Danny Tan would often take her to flower nurseries due to her love of nature, which would help keep her engaged. Photo: Danny Tan
The 53-year-old left his job as a marketing manager at LASALLE in 2010 after the passing of his father and his pancreatic cancer diagnosis. His mother was diagnosed with dementia shortly after.
He decided to become a full-time painter despite having no experience, and found that he could engage his mother through the painting as she could comment on his work. Danny now operates a home-based art gallery in Ang Mo Kio called The Tiffin Gallery.
Danny would often use art as a way to engage with his mother, as he realised that when he paints, she is able to critique the painting. Photo: Danny Tan
‘EVERYBODY THINKS WE’RE TRANSPARENT’
Daniel often feels that caregivers as a group are often overlooked by society. “More often than not people ask, ‘how are you uncle, are you auntie’ and all that, but they miss the person behind pushing the wheelchair, taking that umbrella, taking that walker,” he said. “We kind of are invisible. Everybody thinks we're transparent.”
Danny agrees with this, considering caregivers like himself to be ‘the invisible community’ as there is not much conversation when it comes to dementia awareness. “I think in the first place they should know what dementia is all about,” he said. “If your loved one is suffering, you find out why. You don't wait for information to drop down from the sky.”
“Nobody asks us how our day is. It’s a struggle to get dad to the hospital, and the first thing people say is, ‘hi, how are you, uncle?’ We just stand there as if we’re invisible,” said Daniel, voicing his frustrations. “Even just asking me how my day is would’ve made a difference.”
He also feels that not enough support is given to caregivers.
“It’s nobody’s game to care for caregivers. You’ve got all your societies, your NSA (National Silver Academy), your NCSS (National Council of Social Service), but who takes care of caregivers?” Asked Daniel. “That's a question that perhaps social services, healthcare services, or even community services can, can look into, because if it's everybody's responsibility, then it becomes nobody's responsibility.”
Richard Ashworth, 66, also feels the same way. The retiree and full-time caregiver takes his 87-year-old father with severe dementia to the hospital for regular checkups, but the pandemic has affected their lives.
Due to his father’s dementia, he would often have disagreements with the hospital, with his father refusing to wear a mask and the hospital in turn refusing to allow them in due to protocol. Richard would be forced to reschedule the appointment, with the next one possibly being months away.
“Who cares about us? Being a caregiver is our responsibility,” said Richard. “People always say that caregivers are always burning out, but do they actually look at the source of why these caregivers are burning out and facing so much stress?”
The dementia in Richard’s father would also cause him to become violent at times, and the two would often have arguments and fights. Sometimes, it would get so bad that Richard would often think of killing his father and then himself. “When it comes to awareness, the public should have more empathy when it comes to dementia.”
Richard’s father with severe dementia would often prove to be an issue with both himself and hospitals due to disagreements. Photo: Richard Ashworth
CARING FOR CAREGIVERS
This is also why Daniel and Danny came together and decided to found EnableAsia. Inspired by their experiences, the two started the social enterprise in 2018 in order to take care of caregivers like themselves, along with people with dementia.
The idea also came about after Danny had been featured on Channel NewsAsia’ Facing Dementia series. The show was viewed by millions of people around the world, and after his appearance, he received thousands of messages from viewers, most of which were from people in similar situations.
“We want to take care of caregivers like ourselves, along with those with dementia through things we are passionate about, that being art and technology,” said Daniel.
Like how Danny’s painting could engage his mother, singing allows Daniel to engage his father. “I sing with my dad, and when he sings, it evokes emotions, and he can remember lyrics. He can’t even remember a sentence, but can remember lyrics, and he can emote. He can cry and feel and articulate the words. It’s not reversing his dementia, but it’s putting it at a good level.”
The pair also founded the organisation in order to find like-minded people.
DEMENTIA IN SINGAPORE
According to the Ministry of Health (MOH), one in every 10 seniors who are above 60 suffer from dementia, and that by 2050, that number will increase to 187,000, up from 82,000 in 2018.
There are two common types of dementia: Alzheimer’s Disease and Vascular Dementia. Seniors who have Alzheimer's usually have an onset of symptoms, followed by gradual progression into the illness. Vascular Dementia is caused by a series of strokes, and is also known as post-stroke dementia.
According to the Caregivers Alliance Limited (CAL), the number of full-time caregivers in Singapore is projected to increase from 70,000 to 496,000, assuming that there is one caregiver for each person with a mental health issue.
A LONG JOURNEY
One thing that all three caregivers agree on is that one must be patient when caring for persons with dementia.
“New caregivers must get over the initial phase quickly, because the caregiving journey is a long one,” said Daniel. He also added that caregivers must look after themselves as well. “If you don’t care for yourselves, you’re going to be emotionally, mentally, and financially drained.”
“Dementia is not something that [the victims] ask for. They're not trying to be difficult. They're not trying to give us a hard time. They too have a hard time adapting to a strange environment that they can’t recognise,” said Danny. “Most importantly, you must change your mindset. You must remember that mum is no longer the mum that you knew.”
Even with all the information that is readily available today, there still isn’t that much awareness when it comes to caregiving.
“You can get all the information you need to know from the mainstream media, but when it comes to understanding caregivers, speak to them, speak to us,” said Daniel. “You can even speak to people who are early onsetters [of dementia] who are going through their own journey but can still articulate their feelings.”
Many people in Singapore may have relatives with dementia, or have witnessed loved ones be diagnosed with it. While this may be disheartening, the public can make the best of it.
“Don’t be too upset with what has happened to your loved ones,” said Danny. “With this in mind, everything will be okay.”
Those who wish to understand more about dementia can also go for training with the Caregivers Alliance Limited (CAL) Singapore, or call the Alzheimer's Disease Association (ADA) for more information.
Caregivers Alliance Limited
Address: River Valley Road #04-04 Valley Point, Office Tower 491-B
Singapore 248373
Tel: 6460 4400
Website: https://www.cal.org.sg/
Alzheimer's Disease Association
Address: 20 Bendemeer Rd, #01-02 BS Bendemeer Centre
Singapore 339914
Tel: 6377 0700
Website: https://alz.org.sg/
EnableAsia
Website: https://www.enableasia.org/home/
Email: daniel.lim@enableasia.org
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