Living with disability isn’t easy and it can put limitations on both disabled individuals as well as their caregivers. While the former may struggle as they adjust to their physical changes after being independent for a long time, the latter may find it challenging to keep up with the demands of caregiving much less having a life of their own.
What many people don’t realise is the scale of the problem and how it will affect all of us sooner or later. With Singaporeans living longer, there’s a larger window for illness and severe disability to set in, which means adults may have to spend more years caring for their elderly parents. Meanwhile, as families continue to shrink, more people, including grandchildren and spouses, could find themselves becoming caregivers, sometimes to more than one person.
Yes, caregiving could become part and parcel of life for many of us which means one more ball for us in life’s great juggling act. So, it’s important to know how to manage it while still having a life of your own.
Here are the stories of unstoppable individuals – those who refuse to back down despite the presence of disability in their families, as they continue to provide care, function in society and chase their passions just like everyone else.
Caregiving without losing yourself
Five days a week, while most Singaporeans are still in dream land, running enthusiast Shi Qingyuan is already pounding the pavement as part of a fitness regime he’s had since 2017. The pre-dawn start for his 10-kilometre jogs is a way to free up his day for other commitments, which for the past five years have included being a caregiver to his elderly mother.
Once an independent woman who would travel overseas and go out for meals with Qingyuan and his family, Madam Shi fractured her hip five years ago and slowly began losing mobility. Weak legs plus failing eyesight due to cataracts means she now mostly moves around in a wheelchair. As her caregiver, Qingyuan ferries her for regular medical reviews and physiotherapy sessions. “I fit my day-to-day work schedule with my mum's various appointments at Singapore General Hospital and Changi General Hospital, which involves travelling from my home in the north-western part of Singapore to the east where she lives,” he says.
Due to the elderly woman’s dementia, communication often gets stressful. Qingyuan has to patiently repeat instructions and coax her to do rehabilitation exercises whenever she complains and doesn’t follow doctors' advice. Still, he tries his best to make life as comfortable as possible for his mother.
As consuming as a caregiver’s role can be, Qingyuan makes time for family, church involvements and his passion for running. “Going on a holiday, even a short one, is also important to me, so I can take time to care for myself,” he says.
How does he power on when uncertainty is ever-present while taking care of his mum? “To me, being unstoppable means to keep going when days are hard. My Christian faith reminds me to show love even when times are rough. It is also humbling to recognise that I could one day become like my mum and may behave the same way with my own family. So, I seek to listen and manage my emotions when confronted with her memory loss and stubbornness.”
Looking ahead, he tries to stay positive: “No matter how bad or hard today is, there is hope for tomorrow. It’s important to be thankful that things are not worse, and grateful for good days. I hope to see my mum healthy and happy, able to resolve her vision and mobility challenges.”
The accidental caregiver
For most people, their early 20s are about building a career, having a social life, enjoying hobbies, making future plans and travelling. For K Yeo*, it was the time when she was thrust into a caregiver and medical proxy role to her mother, Madam Yeo*, who began showing signs of dementia in her early 50s.
“I didn’t know how to physically take care of someone, bathe them and help them with toileting. My brother and I also didn’t know how to manage my mum when she started throwing tantrums and becoming aggressive – behaviours she never displayed before. We were like new parents, learning through trial and error and looking for answers on the internet,” she recalls.
K’s daily focus was taking care of Madam Yeo and being “on standby” to see to her needs. Sharing a room with her mum also meant that her duties continued at night when her mother started sundowning – this is where dementia patients experience increased confusion towards the evening and at night. “At times, she’d leave home without our knowledge and disappear for hours. We had to make police reports and conduct night searches for her, roping in family and friends for help,” K says.
It wasn’t easy for the siblings to see their mother go from a strong career woman and their hero to someone reliant on them who could be sad and apologetic on some days and defensive and irritable on others. “It was especially hard when she started forgetting who we were,” K says.
The siblings also had to manage the financial aspect of their mum’s disability, which includes recurring costs such as medical tests, regular appointments, daily medication, hiring a helper and buying diapers. There are also one-off costs like a hospital bed for home use, wheelchair, commodes and equipment for transferring and feeding. Wheelchair-supported transportation costs around S$40 per trip while nursing home fees range from S$3,500 to S$4,000 a month.
One wonders where K finds the stamina and strength to keep going in spite of physical and emotional challenges. She says, “To me, it’s about being able to strive in life and find joy and gratitude in life in spite of my circumstances. Someone once told me ‘能够这一辈子照顾你的父母是你的福’, which roughly means that being able to take care of your parent in this lifetime is a blessing. I’ve held on to this ideology since my 20s, using my mum’s strength in life to motivate me to emulate and be the same person for her.”
For a long time, K didn’t confide in anyone as none of her peers were experiencing similar issues. She also couldn’t turn to aunts and uncles who took longer to accept Madam Yeo’s condition and even accused K and her brother of not looking after her well enough. As a result, she became socially withdrawn, suppressed her emotions and became more “operational” in life. She also buried herself in work to escape home issues. On the encouragement of Madam Yeo’s medical team, K eventually sought help.
“Having support is crucial for finding that balance between having a personal life and being a caregiver. I started to open up to my friends who were extremely supportive and understanding. My brother and I also found a great helper who took care of my mother like her own while we were at work. I’m also grateful that my employers have always been very accommodating,” she says.
After 14 years of having their mother looked after at home, the siblings placed her in a nursing home permanently in early 2023 so she can get the specialised care and medical attention she needs while her helper can return to Indonesia to be with her own family. It’s only now that K is trying to focus on finding work-life balance after years of being a workaholic. “I’m finding my social and personal life again, hanging out with friends, exercising and travelling,” she says.
My new perspective of severe disability
When you’re young, healthy and chasing your life goals, the prospect of severe disability is the furthest thing from your mind. Some may even find it taboo to consider such a thought which would seem incongruent with the very idea of being unstoppable. However, hearing these two caregiver stories has taught me a few things:
- Severe disability doesn’t just happen to very old, frail and inactive people; it can also affect younger people who are physically healthy during their working years as a result of sudden events such as illness.
- When someone becomes severely disabled in their 40s or 50s, the burden of caregiving could fall on their children who may be in their early 20s or, if they don’t have children, their elderly parents who may be in their 60s or older.
- Caregiving is physically, emotionally and financially draining; it’s crucial for caregivers to look after themselves and have a strong support system. Having healthy finances and the right protection plans that support both the patient and their caregiver can make a critical difference to an affected family's quality of life.
- Both the patient and their family members will have to make major lifestyle adjustments to cope with the new situation, but life doesn’t stop with disability.
As Qingyuan and K have shown, sometimes, the limitations that life puts on us can only go so far. A positive attitude and having the right support could make a world of difference in allowing both disabled individuals and their caregivers to make the most of their situation.
*Names changed to protect the family’s privacy.