Melissa remembers the day, back in 2004, when her father went missing while on a regular business trip to Vietnam. “He just never showed up when he was supposed to meet a client,” she recalls.
Repeated phone calls from their home in Singapore to his mobile phone in Vietnam went unanswered. Fortunately, his colleagues eventually found her father. He was safe but totally disorientated at a different hotel, located just up the street from his hotel. The 54-year-old sales director had lost his luggage and his mobile phone battery was flat.
“He was lost and disheveled,” says Melissa, now aged 29. BY Lam Lye Ching Back in Singapore, his doctor ordered a brain scan and follow-up tests showed that he had developed early onset dementia, a term used for those people aged below 65.
Overnight, Melissa and her family had to try to adjust to her father’s new diagnosis, something she feels they didn’t do particularly well. “We didn’t talk about it,” says Melissa, who was 14 at the time. “My mum was struggling to understand,” she says. “It was a day-to-day learning experience for us kids. The journey is so hard as it progresses.” With little information and support on what to expect, Melissa and her family felt isolated as they tried to cope with the gradual decline in her father’s cognitive abilities. They each dealt with his deterioration differently. It was an emotional time. “Dad picked me up from school once and I saw a lot of fear in him driving half-way and then not knowing whether to turn right or left,” she recalls, as he froze in the middle of a busy road.
“I shouted at him and he did not react in a very nice way. If I was educated [about dementia] I’d have known not to react that way.” She looks back at the incident with pain. “He must have felt extremely lost, and would not have understood why,” she continues. “He may not have even recognized me at that moment.” Melissa juggled her studies with looking after her father while her
mother worked to support the family. She finished university with a degree in marketing and even found a comfortable fulltime corporate job in the financial industry. Then, after living with
dementia for ten years, her father passed away at the age of 64.
His death was a wake-up call for Melissa and she quit her cosy job. " I wanted to change but didn't know what change I wanted,” she says. So she took a three-month break and found a job at a start-up company focused on creating a community for solo travellers. But she could not shake off the memories of her family’s struggle and the pain they had experienced. “There were things I didn’t know about dementia when I was growing up and it is not fair to go through something like that; I felt a lot of guilt.” Melissa also felt increasingly sad for her mother, who had looked after her husband for ten years while also raising Melissa, and her brother and sister. “She had no support network, no online community – only a very isolated feeling.” In 2015 Melissa decided to remove the ‘safety net’ of having a job and regular income and make use of her experience working at the start-up.
She established Project We Forgot, an online dementia community, now a thriving social enterprise. Project We Forgot mainly targets young caregivers in their 20s and 30s. As well as sharing personal
stories from young caregivers, it offers emotional support and current medical information in easy layperson terms. According to Alzheimer’s Disease International, in 2018 dementia affected 50 million people worldwide. This is expected to increase to 82 million by 2030. In 2015, according to the Singapore Institute of Mental Health, one in ten people aged 60 and above may have dementia.
Initially, Melissa started compiling stories from caregivers and posting them online. However, none of the stories were from Singapore or other parts of Asia.
“People in the West were sharing their experiences as a coping mechanism – but in Asia, dementia
can be a stigma,” she explains. But, Melissa persevered and waited for stories from Asia. Eventually, encouraged by the stories of others, caregivers in Singapore, Malaysia and Hong Kong, gradually felt comfortable to share their challenges with other online Project We Forgot members. “After experiencing it, you know how painful it is and you want to pass on whatever you have learnt.” As the online community grew, Melissa found herself responding to caregivers asking for help. “I was like a customer relations/ management system,” she explains. “I’d do Skype calls, emails and online chats to help people in need, providing them with the necessary resources. Some came from as far
as Indonesia and India.” She worked long hours, often to 11 pm, as well as on weekends, and
was never sure where funding would come from and how long Project We Forgot would last. Volunteers were always needed to help with a growing list of tasks. Often Melissa was left doing everything. “It can be demoralizing and it has been difficult over the past four years,” she admits.
Not having a regular income was only part of the challenge. Then, Project We Forgot became a social enterprise, expanding its activities to offer online and offline seminars on caregiving, helping their 3000 young members cope with the challenges of having to juggle careers and families while caring for their parents or grandparents. To allow for a wider outreach and financial sustainability, in January 2019 Project We Forgot merged with a home-care provider, Homage. Young carers may commonly experience feelings of guilt, grief or anger as well as stress and tiredness. Or they may want share good things. “A lot of available information talks about the symptoms and not about the journey and family,” says Melissa. “It is the social component that is most important for the caregivers.”
Resource: Reader's Digest Magazine, September 2019
New Words to Learn
disorientated: confused about where you are or which direction you should go
disheveled: if someone's appearance or their clothes, hair etc is disheveled, they look very untidy
deterioration: to become worse
juggled: to change things or arrange them in the way you want, or in a way that makes it possible for you to do something
passed away: died
cozy: comfortable, warm, friendly
shake off: (1) to get rid of illness, problem etc (2) to escape from someone who is chasing you
caregivers: someone who takes care of a child or sick person
layperson: untrained person in a particular subject
compiling: to collect information together and write it into a list, report, book etc
stigma: a strong feeling in society that being in a particular situation or having an illness is something to be ashamed of
pass on: to give someone a piece of information (or something else like an illness) that someone else has given to you
demoralize: to reduce or destroy someone's courage or confidence
outreach: when help, advice, or other services are provided for people who would not otherwise get these services easily
Homage: something you do to show respect for someone or something you think is important
