“I have been the caregiver for my husband Chia Meng Hua for the past 28 years—he suffers from paranoid schizophrenia, and about a month ago, he developed a stroke, which left him bedridden. Now that he is also physically incapacitated, I take care of all his needs from feeding to bathing and cleaning him. I must be by his side 24/7.”
These are the words of Cityruth Cocoanna Christian. Chia hits the sack right after an early dinner around 5 or 6pm every day, the only time that “Coco” has time to do her own things. “Once housework is done, I will read, do some writing and listen to music,” says Coco (as she likes to be called). Chia is then up again at 2-3am to use the bathroom, and Coco is up along with him, helping him with his morning routine. She then gets him ready and set at the dining table while she prepares breakfast.
Balancing the health of both
While managing the needs of her husband is already a full-time job, Coco must also take care of herself. About 10 to 11 years ago, Coco had a freak accident at work, which led to heart failure—she had to undergo a slew of surgeries as multiple organs started failing as a result. Since 2020, following renal issues, she has been undergoing dialysis.
“Every Tuesday, Thursday and Saturday mornings, I need to go out for dialysis. So due to [my husband’s] current condition, I started catering food for him. I do all the housework myself, so I have had to outsource a little bit now,” she says matter-of-factly, adding that as their flat is not at a lift landing level, they are homebound unless absolutely necessary.
Coco shares her struggles in videos on her Facebook account. She also blogs regularly and is a home baker at @ccbakeinn, which she shares with a dialysis co-patient. In her spare time, precious and short as they are, she manages a support group with other dialysis patients such as herself.
Giving up her career
Due to her own failing health, the preschool principal has also had to give up her career. Coco runs her family with their meagre savings and insurance handouts. Not able to manage their mortgage payments, Coco has had to tenant out rooms in their flat.
This, Coco considers to be her biggest challenge—”we have to be stuck at home, so there’s very limited income or resources that we can tap into”. The other big challenge is the limited understanding and funding for caregivers of mentally ill patients.
“I feel that for no one is speaking out for us. In early childhood, we can apply for funding for single parents. We can get a lot for the elderly. But for caregivers like me taking care of a mentally ill patient. There is no funding,” agonises Coco.
Unconditional love through mental illness
Since young Chia has suffered from paranoid schizophrenia—unable to handle confrontations, people who make fun of him or are fierce with him. He also has Intermittent Explosive Disorder (IED) and Obsessive Compulsive Disorder(OCD).
“Our awareness of mental health is poor, in the ‘90s even more so. His family thought he was possessed by a demon and he was taken to the temple and made to drink joss stick water as a child,” Coco says. “Eventually, when he went to National Service, he had a nervous breakdown because he was unable to handle the strict conditions and aggressive behaviours of his superiors.”
“When I came into his life, I tried to bring about awareness that he needed medical intervention,” she explains. He was put on first generation anti-psychotic medication, usage of which, over the years has resulted in the degeneration of his spine, along with an inability to control his neck movements.
Thirty years of that has resulted in auto fusion or where his key vertebrae have fused together. “He has to undergo surgery to fix his neck, but there is chance that he may be completely paralysed if the surgery is not a success. I am worried his condition will get worse, so I prefer that he stays in the wheelchair and not walk around using the frame as he is very unstable,” says Coco.
“I was 17 years old when I met my husband, he was 25. My first impression of him was that he was such a mild-mannered and good-natured person, but he would go through drastic mood swings whenever he was off his medication. He was a very smart man, someone I found very interesting,” says Coco, blushing at the memory of his fond nickname for her: Little watermelon (Xiǎo xīguā in Chinese).
“He cannot help himself, his paranoia gets the better of him. He is in reality a very gentle and kind man,” she explains with genuine love. “When we bought a house, I had to look for a corner unit, otherwise he will start hallucinating that people are looking at him or staring at him. We also cut down our social circle quite a bit—I keep away from the company of people who are confrontational. I used to be an avid church goer in my youth, but I have stopped. The teachings and sermons are always about the man being the alpha and mental issues are seen as an attitude issue. I keep away as the environment is not conducive for my husband’s mental health.”
Even with her tenants, she urges them to keep things light and happy in conversation with him. “If they have any issues to discuss, it is best they talk to me about it,” she says.
Coco has had to crusade for her husband’s innocence on many occasions too. Prone to aggressive behaviour when provoked, Chia has been charged many times and Coco has made numerous trips to the police station or appealed to local MPs for leniency based on his condition.
On one occasion, he was kept in lockup for 48 hours due to failure to pay a penalty. “I was not allowed to leave his anti-psychotic medication for him. After he returned, it was an arduous two-week journey to get him back to a stable condition and adjust his medication,” she laments. There were also bruises on his body, when police officers had mistaken his behaviour for aggression and used physical force.
“It’s very important that police are more understanding and gentle with people suffering from mental illness. Such people are not always violent, they react when they are triggered. So both sides have to be analysed,” she says sadly. “On my part, I am very vocal in the community and let everyone know about my husband’s condition, so people have more empathy towards his behaviour.”
Expert advice on avoiding burnout:
No matter how stoic or strong a caregiver can be, the fact remains that their experience is often overlooked. “More are focused on the care recipient’s well-being”, says See Yen Theng, Deputy Chief, Caregiving and Community Mental Health Division at Agency for Integrated Care (AIC). “[But] caregivers need to be mindful of their own mental health and take breaks when needed, to avoid burnout. Ensuring the mental well-being of caregivers is as equally important as that of the care recipients,” she adds.
Tricia Lee, Head of Comms at Caregivers Alliance Limited (CAL) agrees that it can be especially draining for someone caring for a person with a mental health condition. “Caregivers are vulnerable to caregiver fatigue, depression, loss of hope, falling into mental illnesses themselves and even suicidal ideation,” she adds.
While suicidal feelings would be the most obvious sign of caregiver burnout, other signs to look out for include:
- Drinking more alcohol than usual.
- Often taking prescriptive medication without a doctor’s advice.
- Having skin rashes, backaches, colds or a flu that won’t go away.
- Not being able to focus or think clearly.
- Feeling tired and not wanting to do anything.
- Feeling sad, and worthless and guilty all the time; being fearful and anxious.
- Physically hurting, or thinking about hurting, your care recipient.
AIC and CAL both offer various resources for caregiver’s of various kinds with the latter being the only non-profit organisation in Singapore catering to the needs of caregivers of persons with mental health issues, including dementia through its C2C programme. “CAL also actively does outreach with hospitals, corporations, communities, faith- based groups and IHLs and schools to raise greater awareness of mental wellbeing,” adds Lee.
The main objective between the concerted efforts is to remind caregivers that they are not alone in their fight, with an aim to further expand its reach and further reduce caregiving costs.
Resources of help for caregivers:
- The AIC Hotline 1800-650-6060 is a first-stop resource to obtain information on services, financial grants, training, self-help tips and resources. Caregivers may also walk in to AIC Links located at public and community hospitals.
- Caregivers may tap on to AIC’s The Caregivers Training Grant, which provides an annual $200 grant for approved caregiver training courses, as well as the monthly enhanced Home Caregiving Grant that caregivers can apply for to offset some of the care-related expenses. Visit the AIC website for details.
- For online self-help, caregivers may visit SupportGoWhere’s Care Services Recommender to be directed to relevant schemes and services recommended based on their needs.
- Caregivers can also email email@example.com for linkage to community partners such as the community outreach teams (CREST) for emotional support.