Living With A Disability: A Singaporean Family’s Story & How They Coped With the Costs

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What was supposed to be a slow return to routine after a fun-filled trip to Taiwan in June 2017 turned into an unforgettable ordeal for a family of four.

Jason (not his real name), 45, still remembers what happened like it was yesterday. He says: “My wife, Julie (not her real name), went to the washroom at Jurong Point. We were there to get groceries after we touched down at night.”

However, after almost half an hour, Julie had yet to emerge from the washroom and Jason grew worried.

“I asked my daughter to check on her. Shortly after, she came running back exclaiming ‘Mummy fainted!’ My wife was lying unconscious on the toilet floor. Thankfully, someone had gone to her aid and called for an ambulance,” he recalls. 

Julie was sent to the nearest hospital, where she would be warded for almost 2 months.

From that moment, their life would change.


The diagnosis and treatment

While unconscious, Julie underwent many scans and tests, but doctors were unable to ascertain what had caused her to faint. It was only after she finally roused, 24 hours later, that Jason noticed something was amiss. The left side of her body was immobile.

Immediately, he informed a doctor who ordered another round of scans. Thereafter, she was diagnosed as having suffered a very serious stroke.

As a result, Julie — then just 42 years old — became paralysed on her left side and lost her ability to form new memories. 

Says Jason: “It was totally unexpected. Before her stroke, my wife and I would bring our kids out every weekend, be it to the zoo, the beach, or out for a meal. We’d also exercise from time to time; she would jog after work and I would do laps in the neighbourhood swimming pool. We were only in our early 40s with 2 young children (a daughter, then 8 years old, and a son, then 5) — who’d have known this would happen?”

“We were very happy as there was nothing to worry about; but things are different now,” says Jason, who has become his wife’s main caregiver.

He adds: “When you want to save a stroke patient, you need to do so within 4 hours. I was so sad to learn this, especially when the doctor said that my wife would never go back to how she was. What to do, it has already happened.”

Julie was warded for close to 60 days, during which she needed to relearn everyday functions such as swallowing food so that she could eat on her own. Physiotherapy sessions were also arranged for her, so that she could regain the motor skills on the left side of her body through picking up objects or walking.

“I don’t know how it is for other stroke patients, but my wife kept telling the physiotherapists she didn’t want to do the exercises. She just wanted to go home,” Jason says. “Nevertheless, the physiotherapists tried their best to complete each session with her.”

As her main caregiver, Jason found these sessions useful too, especially in terms of helping to rehabilitate and care for his wife when she was discharged.


The new normal

Since her stroke, Julie has been unable to do many activities of daily living (ADLs) on her own.

She now relies on a walking stick to get around, but someone has to be with her 24/7 to support her, help her stand up or keep an eye on her in case she falls. When the family goes out, she sits in a wheelchair. She also needs help with going to the toilet, bathing, transferring and so on. And as she only has the use of one hand, her food has to be prepared for her before she can feed herself.

“She’s also become very insecure and needs me to always be beside her. Even now, it’s difficult to get her to do something unless I’m by her side,” he adds.

On the phone, Jason’s tone is measured, but his words reveal his heartache. He shares how Julie, a loving mother, used to be very dedicated to her family, but after the incident, she slowly became withdrawn and distant from her kids.

He says: “Sometimes, when I look at old photos of her, I really miss those times we had. Her personality is totally different now — she still chats with me and things are slowly improving but it’s not like before.”


Pillar of the family

Overnight, the responsibility of taking care of the entire household shifted to Jason, who had to become the sole pillar of the family. A chef by profession, he works 10 hours for 6 days a week.

Thankfully, his employer was understanding and gave him the time he needed to take care of his family and to settle household matters when his wife had the stroke. This was a great help, as Jason had to take over the family’s finances, look after the needs of their 2 young children, prepare the home for Julie’s discharge and teach their helper how to care for Julie among other things.

He also had to deal with his own emotions while helping his kids understand the new situation and what had happened to their mother.

Jason recalls: “It was difficult in the beginning, especially the first 3 to 6 months. Our children were so young, and I felt very lost. A lot of tears were shed.

“I told my daughter, ‘This is not what Mummy wants. This happened, there’s no choice, we have to face it. So we have to look forward; we can’t just stop everything because of this. Of course, Daddy is very sad. But even if Daddy is sad, I need to think of you and your brother’s future.”

As the sole breadwinner of the family, Jason knew that quitting his job wouldn’t be an option. He would have to make sacrifices and manage his time well in order to cater to the whole family’s needs.

Even Jason’s days off are dedicated to his family, either taking the children out for a meal or an outing to the zoo. On some of these occasions, Julie stays home with the helper. There’s hardly any time left for himself, let alone his then-regular swimming sessions, but it doesn’t bother him.

“I used to have more free time, but with this situation, I cannot ask for more. For now, I just wish that my children grow up healthy and my wife gets better. That’s all. Giving up is not an option either. As a man, as a father of two, there’s no reason to give up. At times, it can be frustrating, but I just keep my feelings inside,” he says.

His approach to health has changed too. The self-professed former “junk food” lover now eats healthy meals with more vegetables and less rice. He’s also reduced fried food from his diet.

He explains: “I need to take care of myself, to improve my health. I cannot afford to collapse as I’m the only pillar at home. I told myself, ‘It’s either I go through this or the situation gets worse.’”


Coping with the costs

Once a dual-income family, the household of 5 now relies on Jason as the sole breadwinner. Of course, expenses have gone up, especially for medication, petrol, and Julie’s other needs. Jason has also taken on the additional responsibility of balancing the family’s budget — something his wife, a former accountant, did when she was well.

Jason recalls: “She would handle all the paperwork, bills… everything. I would just bring home the money and she would settle everything. But after she collapsed, everything fell onto my shoulders. I felt so stressed, upset and extremely lost.”

Other than having to manage financial matters during Julie’s hospitalisation, Jason also had to prepare the family home for his wife’s discharge. He engaged a contractor to install grab bars in their toilet at home and also purchased mobility equipment for her.

Costs incurred How much? Frequency
  • Install grab bars in toilet
  • Wheelchair
  • Toilet chair
  • Safety rail for the bed
$1,000 One-off

In addition to shouldering all the household expenses and bills on his own, the regular expenses for the household has also increased. Jason also has to ensure that he manages the household expenses carefully so that there’s sufficient amount set aside for essential expenses due to his wife’s disability.

Here’s a breakdown of Jason’s recurring caregiver expenses:

Essential long-term care expenses How much? Frequency
Medical: Physiotherapy, acupuncture, medication $600 Monthly
Car loan instalments $900 Monthly
Petrol consumption $400 Monthly
Doctor visits (after subsidies) $125 Quarterly
Hiring helper $680 Monthly
Total ~$2,600/month

From the table above, Jason spends a total of about $2,600 each month for his wife’s long-term care needs.

The total monthly long-term care cost is in line with a 2018 Singlife Long-term Care Study, which found that the average monthly cost for aids to help in daily living, everyday living expenses, care-giver expenses, medication and therapy, and miscellaneous expenses amounts to $2,324. 

With Jason’s monthly salary of $5,000 and no other income sources to rely on, the family is grateful for the monthly disability insurance payouts of $1,200 (inclusive of $400 monthly from ElderShield for the first 6 years). Julie will continue to receive S$1,200 every month for as long as she is severely disabled. This comes from her ElderShield Supplement plan with Singlife, that she had signed up for prior to her stroke and paid premiums using her MediSave. Her Supplement plan premiums have been waived since she became disabled.

“I’m very glad and thankful my wife decided to upgrade her ElderShield before she had a stroke though we were never firm believers of insurance,” Jason says. “The monthly payout definitely helps cover the bills and I can save some of my salary for a rainy day.”

With the help of the disability insurance payouts, Jason is able to save $500 to $1,000 a month from his salary — be it for his children’s education fund, or to spend on household items and repairs. 

Case in point: He recently had to replace the family’s laptop. If not for the savings, they might have struggled to make the purchase as Jason had to take a 25% pay cut for about 4 months at the height of the Covid-19 pandemic in Singapore, making their budget extremely tight, with hardly any money left over at the end of each month.


Good to prepare for the unexpected

Having seen how Julie’s ElderShield Supplement plan helped his family cope with expenses after Julie’s stroke, Jason started to buy insurance plans for himself and their children.

“Life is fragile. Should anything happen to me, I now have the assurance that my loved ones will have some financial support.”

Today, the family is still soldiering on, with Jason leading the charge. While Julie’s physical state remains unchanged, Jason says she is in a much better state of mind than she was right after the stroke.

He notes: “Because there’s always family around her, her mood has improved and she doesn’t cry often or reject everything anymore. Now she’s even working harder to regain more mobility so the family can travel together again when the Covid-19 pandemic blows over.”

Jason is also proud of his kids who have been helping out in their little ways, like pushing Julie’s wheelchair when they’re out. In particular, he says his daughter has become his confidante, offering a listening ear and sharing his emotional burden from time to time.

He occasionally meets his buddies to destress too. He says: “They know my situation. They’d say, ‘Come on, you need to take a break.’ So we’ll gather, but not for very long, at most 3 hours then I’ll go home.” 

“No one would imagine having a life like this, but we’re making the most of what we have and that’s what matters.”

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