As a baby, Leona Heng could barely move a muscle when Ms Josefina Amparo Hosena, 40, came to work for her family. Leona, now 3, had been diagnosed with Edwards’ Syndrome, a potentially life-threatening condition which disrupts children’s development. Leona had just undergone a complex surgical operation when Josefina joined the Heng family.
Ms Lim Shu Ling, Sherry, 29, is the elder sister of Lim Kian Say, 26, who has Down Syndrome. Sherry is very involved in his life although her parents are the main caregivers. She represents the family at DSA (Down Syndrome Association) events and alternates with her parents to accompany Kian Say for lessons and activities.
Single-parent Mdm Kamisah brought up her 7-year old son, Putra, who is quadriplegic and has visual impairment, whilst caring for her two older children. Today, she is very proud of her close-knit family, especially at how her two older children, Firdaus,19, and Nadra,14, help shoulder the responsibility for Putra’s care and well-being with her.
Mdm Kamisah’s family works as a team, with everyone playing their part. Firdaus sends Putra to Rainbow Centre in the morning while Mdm Kamisah works the night shift at a factory. She fetches Putra home after school ends. Nadra plays with Putra when she comes home from school while her mum rests or cooks, and listens to songs with Putra to keep him engaged. Firdaus took a part-time job at a restaurant to help support the family. Asked how he balances caring for his brother with studying and time with friends, Firdaus concedes to struggling with it. He says, “You need to let go of your own fun time as family comes first”.
Things were not so harmonious when the family faced trying times in earlier years. Because Putra was from Mdm Kamisah’s second marriage, Firdaus and Nadra found it difficult accepting him as their brother. Things got worse after her second husband left the family. Firdaus and Nadra struggled to understand how Putra’s birth father could abandon him.
Mdm Kamisah remained steadfast in commitment to the family. She emphasised the importance of loving and supporting each other despite the odds the family faced. It was Mdm Kamisah’s strength and devotion to her family that moved Firdaus and Nadra. They learned how they could engage Putra and contribute to his learning and development. The arguments lessened with their acceptance of Putra as their own brother as they fully embraced caring for him in their mum’s absence.
Mdm Kamisah is an exemplary role model to her children. She consider her children her best friends. Both show maturity uncommon for people so young. Firdaus attributes his sense of responsibility to a realisation that he needs to care for the family, as no one else can or would. Mdm Kamisah says Putra has taught her to be strong. Her determination, resilience and willpower has rubbed off on her children, who reflect an optimism about life and unstinting love for their brother Putra whom they had struggled to accept when he was first born.
Mr Poh Khuat, 76, is sole caregiver to his wife of more than 40 years, Mdm Kang, who was diagnosed with Alzheimer’s Disease more than 9 years back. Although Mr Poh was himself recently diagnosed with Stage 2 Lung Cancer, he remains single-minded in his desire to personally care for his wife, bouncing back into action within a short time after undergoing chemotherapy himself. The couple have 3 daughters and 1 son who do not live with them.
Despite his wife’s inability to walk or to recognise him since 2016, Mr Poh has taken this setback in his stride as he accepts the loss of function was inevitable. He remains stoic and committed to ensuring that Mdm Kang knows that she is being cared for and loved by him. Despite having hurt himself before when lifting her, he insists on personally caring for Mdm Kang as long as he is physically able, deferring suggestions to admit his wife into a nursing home.
Mr Poh has been outgoing and resourceful in seeking ways to keep his wife socially engaged. The couple have attended Memories Café at the Alzheimer’s Disease Association (ADA) regularly since it was initiated in 2016. He took pains to learn how to record video clips on his mobile phone in order to help Mdm Kang reminisce the activities she enjoyed at Memories Café. Mr Poh’s devotion to Mdm Kang and his gentle manner with others has touched fellow caregivers, volunteers and staff at ADA as well. They have been inspired by his patient and loving manner with his wife, as well as his generosity of spirit to engage other seniors with Alzheimer’s at the ADA Memories Café sessions.
Mr Poh’s resilience and patience in the face of Mdm Kang’s challenging behaviours stems from his full acceptance of her deteriorating condition which he realises is not reversible. Despite the exhaustion experienced in cleaning up after her and her challenging behaviour, Mr Poh seldom raises his voice or gets upset with his beloved wife. He notes pointedly that staying calm, focused and persevering is part and parcel of being a caregiver – and to get on to do what needs to be done.
Mr Ang Beng Hui, 39, was attending kindergarten when his mother’s first bout of aggressive behaviour triggered by schizophrenia occurred. Concerned for his children’s safety, Beng Hui’s father arranged for Beng Hui and his two younger sisters to be brought up by their paternal grandparents.
At the age of 14, Beng Hui’s father started to prepare his son to assume the role of primary caregiver. He did so by learning from his father and reading widely on schizophrenia. Beng Hui became his mother’s sole caregiver after his father’s passing in 2014. His two younger sisters, who have their own families, contribute by providing financial support as they have difficulties handling Mrs Ang’s challenging behaviour.
Beng Hui matured faster than most teenagers, balancing studies while caring for his mother. He fastidiously ensured she never missed her doctor’s appointments and took the prescribed medications regularly. Drawing support from nurses, doctors and social workers at the Institute of Mental Health (IMH), Beng Hui has become Mrs Ang’s protector. When neighbours reported her to the police for aggressive behaviour, he explained her condition to them and the police, taking the opportunity to educate them on mental illness.
Today, Beng Hui is an active participant in caregiver-related workshops at IMH focusing on mental health issues. He hopes the public would understand that one’s mental condition may trigger difficult behaviour in persons with mental illness, but that this may not be so if the mental illness is well managed. When discussing long-term plans with IMH for Mrs Ang in 2013, despite nursing home placement being proposed as an option, Beng Hui chose to keep his mother at home. He engaged a domestic helper and gradually imparted his knowledge and skills to her, so she would be able to manage Mrs Ang’s behaviour.