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Generation Grit: Teen looked after dementia-stricken dad from the age of 14

Melissa Chan became her father's caregiver at the age of 14 when he was diagnosed with young onset dementia. She shares her story in this series on millennials who inspire us.

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Theresa Tan on 15 May 2019

The Straits Times

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The signs were there, although they did not recognise them at the time.

 

From a sociable and chatty man, Miss Melissa Chan's father became withdrawn, depressed and forgetful.

 

Initially, Mr Henry Chan, a sales director, was diagnosed with depression. His family thought he was stressed by his job.

 

But one day, he went missing while on a business trip in Vietnam - he could not find his way back to the hotel - and his colleagues hunted high and low before they found him, lost and dishevelled.

 

He was diagnosed with young onset dementia at age 54. His children were still teenagers.

 

Miss Chan, now 28, said: "I didn't talk to my friends about what was happening as I felt they wouldn't understand. I also didn't want people to think my dad was crazy."

 

In the decade before he died, Mr Chan would often get lost. He would forget if he had eaten or taken a shower. As his condition worsened, his speech also became incoherent and, in the end, he could not recognise Miss Chan.

 

After he went missing for a night and had to be taken home by the police, his family came up with a schedule so that there would always be someone with him.

 

At the time, Miss Chan was studying business management at Nanyang Polytechnic. Often, she skipped class to care for her father as she had the most flexible schedule among the three children. Her elder brother was in university and living on campus and her younger sister was in secondary school, while their mother worked as an accounts executive.

 

It was a struggle. Miss Chan was absent for more than half of her lectures and depended on her friend's notes to keep up with her studies. Her frequent absence from school affected her grades, but she managed to graduate.

 

Friends who did not know about her father's condition would complain that she was frequently cancelling their appointments at the last minute.

 

As the disease progressed, her father also needed help to go to the toilet. No one at home got a good night's rest as he would often leave the toilet in a mess when he got up to use it, Miss Chan said.

 

"I was angry and bitter. Why was this happening to my dad? I also didn't know how to deal with it and I felt I was going through it on my own," she said. "I couldn't tell my friends that my dad carried his own poop out of the loo, or that sometimes he would put the poop in his pocket."

 

It pained her to see him in that state as she had been close to him before dementia took its toll.

 

Later, he was diagnosed with liver cancer and treated for it. The cancer relapsed after four or five years and he died in 2014 at the age of 64.

 

While Miss Chan enjoyed her marketing job with a luxury hotel chain and later with a travel start-up, her father's death made her re-examine her own life. She wanted to reach out to younger caregivers whose loved ones suffer from dementia.

 

She said: "I wanted to get people to share their stories and form a community to support one another so that they don't have to go through what I went through. And they don't have to figure out how to solve every problem on their own."

 

She quit her job to start social enterprise Project We Forgot in 2015. Besides forming a community of support, it also runs online and offline seminars on dementia-related topics, among other things.

 

It was far from a walk in the park to keep the initiative going. For one thing, Singaporeans were reluctant to share their stories, although Miss Chan slowly managed to get more young caregivers to open up.

 

They were worried that it would affect their careers or romantic prospects if others knew they had to care for a parent with dementia. There was also the fear of being judged, said Miss Chan.

 

She saw young people whose boyfriends or girlfriends called off their relationships as they could not handle their partners making sacrifices to care for a parent with dementia.

 

Then, there was the difficulty of getting funding or sponsorship. Miss Chan went without a pay cheque for about three years after she started Project We Forgot.

 

Mr Jeremy Mok, one of the volunteers at the social enterprise, had been caring for his late grandmother before she died. "Most people would not want to revisit such a difficult period of their lives as they would want to move on," said the 31-year-old social worker.

 

"So it's impressive that Melissa used her experience as positive energy to support young caregivers."

 

He added: "At our age, most people would be thinking of career progression and settling down, but Melissa put her career aside to start Project We Forgot. She has sacrificed a lot for it, but she is very driven in her work because of her own experience."

 

In January, Project We Forgot merged with home-care provider Homage. The partnership allows Project We Forgot to reach more caregivers, said Miss Chan.

 

Most of the caregivers in the Project We Forgot community are in their 20s and 30s, caring for parents and grandparents. They face a round-the-clock burden of caregiving, while juggling their careers and families, she said.

 

Before the merger with Homage, the presence of dedicated volunteers at Project We Forgot kept Miss Chan going. So did feedback that their work mattered.

 

The young caregivers include a 17-year-old student, who has to care for a grandmother with dementia as both her parents are working. The girl broke down while talking to Miss Chan, as she felt burnt-out but had no one to talk to.

 

Miss Chan said: "I drew strength from seeing how my mum cared for my dad. And, over time, I realised how many families are affected by dementia. I don't think it's right that caregivers suffer silently. I know how painful that is.

 

"So while there were many days I wanted to quit Project We Forgot, we have received messages from people thanking us for the work we do and that has kept me going."

 

Source: The Straits Times © Singapore Press Holdings Limited. Reproduced with permission.

 

 

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