Gabriel Chan’s life changed three years ago, when his teenage daughter Kristyn went from outgoing and chatty to sad and withdrawn.
Then 15 years old, she began to struggle with the pressures of school and low self-image. She was later found to have attention deficit hyperactivity disorder (ADHD), which affected her self-confidence and made it hard for her to focus on her studies. The fact that she constantly compared herself to her three siblings, all high achievers, only complicated the situation.
Concerned for her well-being, Chan went into semi-retirement in 2019, using the time to bond with his youngest daughter. His wife, too, stayed by Kristyn’s side during difficult moments to offer care and reassurance.
Kristyn was studying in Australia earlier this year when the Covid-19 pandemic hit. Returning to her family home in Singapore, she found it difficult to cope with the social isolation and disruption caused by harsh stay-at-home restrictions. In early April, she nearly died after taking a cocktail of medications.
“We almost lost her, which hurt a lot,” says Chan. While his daughter was in hospital, she saw a psychiatrist and a psychologist.
“After that harrowing night, our daughter began receiving expert care. She was also prescribed new medication and taught coping skills.”
Today, Kristyn has turned a corner. She attends school online, has a part-time job, and is excited about starting an undergraduate programme in Australia in 2021. The therapists have recommended reducing her medication and counselling sessions.
Chan and his wife are thankful. “I didn’t know what to do or whom to turn to. I was confused, anxious and frustrated and often asked myself, ‘Why me?’ My wife and I kept our feelings to ourselves because we didn’t think our friends and relatives would understand.”
Isolation and a lack of support aren’t the only challenges carers face. On top of duties which may include medication management, feeding, toileting, monitoring vital signs and cleaning, some carers must also cope with their loved one’s bad behaviour stemming from a mental health condition which may cause mood swings, hallucinations, depression and/or anxiety.
Help from mental health experts may be limited to once a month or less, and the carer might feel overwhelmed.
“Carers might also feel hopeless because recovering from a mental health condition can sometimes take years,” says Eirliani Abdul Rahman, head of operations and programmes at Caregivers Alliance (CAL), a non-profit organisation in Singapore that cares for people with mental health issues.
“It can be a challenge navigating the health care system to find the most effective treatment.
Mental health issues are still taboo in some societies and this can make it hard to find support or ask for help.”
Carers may also need to leave paid jobs to be at home full time if their patient’s condition deteriorates. Abdul Rahman says that pandemic-related restrictions deny carers access to their usual support network.
Main carers are finding that secondary carers are no longer available, leaving them to take on all the tasks alone. Burnout is a real risk for carers who are already exhausted, frustrated and stressed out, and who might feel guilty for not doing enough.
Siew Han, a psychotherapist at Gentle Mind Counselling & Psychotherapy in Singapore, says that physical signs of carer burnout include weight loss or gain, disturbed sleep patterns, constant fatigue despite getting sufficient rest, and headaches and body aches.
“Emotionally, burnout may show up as compassion or empathy fatigue – when carers have no time to recharge or care for themselves, their capacity to care and feel for others erodes,” Han explains. “Carers may also feel irritated or embittered about the situation they’re in and then feel guilty about having these emotions.”
CAL runs a carer training programme that emphasises the importance of taking care of themselves. Abdul Rahman says this could include going for walks, exercising, spending time on a hobby or any activity that offers respite or an outlet for recreation.
Carers should make time for self-care every couple of weeks, she says, and arrange for a someone to take over their duties for those few hours.
Chan enrolled in CAL’s programme in September 2019. It helped him appreciate the need for self-care. When he feels drained, he opens up to his wife. And when he needs strength he turns to his religion and prays with his family. Long walks and regular workouts also bring balance to his life and help him sleep better.
Han says it’s important for carers to establish healthy boundaries to protect their mental and physical well-being. These boundaries can help prevent burnout, decrease the fear of being remiss or negligent, and reduce feelings of guilt and inadequacy.
The training gave him a better understanding of mental health – and renewed his hope of recovery for people with mental health illnesses. It helped him realise that his family isn’t alone in their experience and that there is support and resources available. It has taught him to have faith and to focus on the positive.
“There will be bad days, but they will pass so don’t dwell on them,” he explains. “Enjoy the good days and live for the moment. Celebrate the small improvements and know that your loved one understands that you’re doing your best to support them. In our case, staying hopeful keeps us going as our daughter fights the negative thoughts.”
Kristyn has thrived on her parents’ dedicated care and acknowledges that their positive attitude is infectious. “They’ve always been my pillars of support, but during my recovery they were the ones who truly made me believe that I would get better. This faith encourages me to keep me going every day.”
This article was first published in South China Morning Post.