Caregivers of persons with mental health issues (PMHIs) often struggle quietly. They put up a brave front, but the stress can take a heavy toll on them.
Dr Sally Thio, executive director of Caregivers Alliance Limited (CAL), which seeks to improve the lives of PMHI caregivers through education, support and advocacy, says that many of them bear several burdens, including trying to make ends meet on a single income and coping with changes in the personality of their loved ones.
“The personal cost to the family in providing support and care can be high and burn-out is likely if we do not help them,” she adds.
According to the 2011 Singapore Mental Health Study, more than one in 10 Singaporeans will experience a mental health issue in their lifetime, the top three being major depressive disorder, alcohol abuse and obsessive-compulsive disorder.
In sickness and health
Even after 28 years of marriage, Madam Samaniah Samri still counts her blessings every day that her husband is with her.
Their relationship took a beating five years ago when his youngest sister and nephew committed suicide only a few months apart.
“Suddenly, my husband could no longer control his temper and would lash out at our daughter and me. I struggled to understand why he had changed so much,” recalls Madam Samaniah.
After referring him to the Institute of Mental Health (IMH), she discovered that he was suffering from depression and needed treatment.
The 65-year-old, who has worked as a clerical officer at a statutory board for 45 years, took over his care.
Her in-laws provided her some financial support for her husband’s treatment and helped to look after him while she was at work.
Madam Samaniah, who is diabetic, recently had to have her left leg amputated. She spent months recuperating at home on medical leave and her daughter had to quit her job to take care of her parents. The family became financially dependent on their in-laws. Madam Samaniah has since regained her strength and returned to work.
Fellow caregiver James, 23, has been in a two-year relationship with his girlfriend, who suffers from depression with psychotic features.
The psychology student says that she told him about her condition — which involves cutting herself when she feels stressed — when they became friends.
James helped her to put an end to the self-injury, but she developed panic attacks in public, and he now has had to think of ways to keep her away from crowds.
“Whenever I think of our life together, I am reminded that I am in love with the amazing person behind the mental illness. It gives me the strength to carry on,” he says.
Supporting one another
Since its establishment, CAL has provided training to 1,600 caregivers like Madam Samaniah and James.
The organisation works with hospitals such as IMH, Khoo Teck Puat Hospital, Ng Teng Fong General Hospital and Tan Tock Seng Hospital to reach out to caregivers and encourage them to go through its Caregiver-to-Caregiver Education Programme (C2C), a 12-week education and training programme conducted by caregivers and allied health professionals.
The programmes provide caregivers with knowledge about mental illness and experiential learning so they can empathise with their loved ones and look after their own emotional well-being.
Says CAL’s Dr Thio: “Caregivers who have attended and benefited from our programmes appreciate the love, care and support they received. In return, they can extend that support to other caregivers by volunteering as caregiver leaders. It also facilitates their emotional healing.”
Madam Samaniah, who started attending CAL’s C2C programme last year, says the training helped her to understand her husband’s condition and how to cope with her emotions.
James was referred to CAL in 2015 by a colleague who was also a caregiver. He completed the Certified Caregivers Support Specialist Programme in March last year, and signed up as a volunteer himself.
He says: “I received so much empathy, support and much-needed advice from the CAL trainers. I just want to pass it on.”
CAL is supported by the Care & Share Movement, which was launched in 2013 to celebrate Singapore’s Golden Jubilee.
Under the Movement, eligible donations raised by Community Chest and 240 participating social service organisations between December 1, 2013, and March 31, 2016, were matched dollar-for-dollar by the Government. The matched amounts go towards building the capabilities and capacities of the social service sector to meet rising needs in the future.
CAL is currently piloting a Caregivers Resilience Training (CRT) programme for grassroots leaders and caregivers in the eastern region of Singapore. CRT raises mental health awareness and teaches participants ways to support caregivers in their community.
The National Council of Social Service, which advocates for the integration of PMHIs at the workplace and in the community, has also been working with CAL to enhance and expand its programmes.