Evelyn’s cheerful smile gives away no hint of the difficulties she faced as a caregiver. Years ago, she noticed something was amiss with her son, Wei Jie*. He was then 15 years old, and though he had always been a very careful and conscientious student, he began having difficulty with schoolwork and punctuality. Evelyn would receive calls from Wei Jie asking her simple questions like “what should I eat?” or “how should I talk to my friends?”, and she also noticed that he took longer than normal do things and seemed lost in his own world.
Evelyn did not think it was anything more than anxiety. Upon checking with him, Wei Jie told her that he had injured his neck while doing a standing broad jump. As a result, Evelyn brought him to KK Women's and Children's Hospital (KKH) for checks, but scanning showed nothing abnormal. He was eventually referred to a psychiatrist, and there he was diagnosed with Obsessive-Compulsive Disorder (OCD). Evelyn found out that he struggled with making simple decisions because the OCD caused him to have obsessive thoughts that would constantly repeat in his mind. He would constantly be thinking about what decision to make and could freeze at the same spot for a long time, causing him to appear to have slow reactions.
However, things did not improve after the diagnosis as Evelyn’s son was not compliant to the medication he was given and to his psychotherapy treatment. Thus, he did not get better during his time in secondary school.
Obsessions and Compulsions
The OCD worsened when Wei Jie began his studies at a polytechnic two years later. Instead of only having obsessive thoughts, he also began to display compulsive behaviour. He would repeat certain actions, such as continuously switching the light on and off, and opening and closing the fridge door at home. After classes, Evelyn could sometimes wait almost an hour after school for him to complete some of his daily rituals before she could drive him home. He would even ask his family members to help him perform these rituals at times. Once, he stopped bathing for 5 days. That was the last straw for Evelyn, who decided that more drastic action was needed, and sent him to the Institute of Mental Health’s (IMH) child ward. After his discharge, she stayed home to look after him, making sure that he took his medication and taking care of his daily needs, as he was increasingly unable to handle things on his own.
For Evelyn, a major source of stress in caring for Wei Jie was her family’s reaction to his condition. Her husband felt that they should prevent him from following his compulsions, as it was worsening his OCD. Evelyn understood his point of view, but often felt torn between her son’s begging and her husband’s resistance. It was also hard on Wei Jie’s younger sister, who did not understand why she had to give in all the time to him. The relationship between the two siblings was strained.
Stressed and worried for her son, while struggling to bond her family together, Evelyn came down with depression repeatedly. Over the course of half a year, she lost around 5 to 6 kg. She even had panic attacks twice, which resulted in her being admitted to Tan Tock Seng Hospital.
Persevering through National Service
Due to the stigma associated with mental health issues, Evelyn was adamant that her son should serve National Service (NS) despite his condition. She did not want the absence of NS in her son’s records to cause employers to decide not to offer him a job. To Evelyn’s great relief, KKH was willing to write a letter in support of his admittance into NS, and Wei Jie was enlisted.
Nonetheless, NS proved to be a particularly difficult stage in her son’s life, as he struggled to comply with the strict army procedures. The family also went through many nights of anxiety and feelings of helplessness, often searching for Wei Jie when he struggled to reach home on his own because of his condition. Occasionally, Wei Jie would even arrive home escorted by the police or by his members of his NS unit.
It reached a point when the NS unit made the decision to discharge Evelyn’s son after a long term MC. Evelyn managed to convince them to keep him all the way through his NS with the support of her son’s reporting officer.
CAL: A Turning Point
Increasingly frustrated, Evelyn eventually decided that she needed help. She chose to attend a seminar on OCD at the Health Promotion Board in September 2015. The event allowed her to meet many other caregivers to loved ones with OCD, and she was convinced to join CAL’s C2C programme by a fellow caregiver to learn more about mental health and how to be a better caregiver.
After going through C2C, one crucial thing that Evelyn realised was the importance of boundaries and self-care. She decided that she could not be looking after Wei Jie at all hours of the day, because it was draining her excessively. Shortly after, she took on a full-time job as a retail supervisor. The arrangement turned out to be a major turning point in their lives. It not only provided Evelyn with much needed breathing space, but also compelled Wei Jie to take the first step in doing things on his own again.
Upon completion of her C2C class, Evelyn became a volunteer trainer with CAL. Over time, her people skills and passion for helping other caregivers caught the eye of Sally, the then Executive Director of CAL, who urged her to join CAL as a full-time staff.
Advocates for Mental Health
Life has since changed for the better for Evelyn and Wei Jie.
Gradually, with Evelyn’s support, Wei Jie has learnt to better cope with his condition. He has now attained a state of recovery where he is able to go about doing daily tasks without supervision. He even helps out Evelyn in the kitchen, does household chores, and looks after his grandmother. Because of his remarkable progress, he is now employed at IMH as a part-time peer support specialist, where he serves as a role model to others who have OCD. A keen reader since young, he is also taking a part-time course in psychology.
Evelyn is currently an indispensable part of CAL’s team based at the Caregivers Support Centre (CSC) at IMH. Her work involves reaching out to other caregivers, tapping on her personal experience to help them overcome their caregiving challenges. She conducts C2C lessons in Chinese, and has been an important contributor in meeting the needs of the Chinese-speaking caregiver community.
To Evelyn, in hindsight, early treatment is important. She wishes she had learnt about mental health earlier, so that she could have been better equipped to cope as a caregiver. As a result, she is passionate about helping other caregivers in their journeys. With her juggling work alongside being a caregiver to her son, and lately also to her mother who has dementia, she has to set boundaries to manage her own well-being. She takes time out for herself by regularly spending quality time with her family, and enjoys the little breaks that she finds throughout the day.
*Name changed to protect Evelyn’s son’s identity