'I worry if he’s taken care of': The tears and fears of millennial caregivers to siblings with special needs

SINGAPORE: Vaduvkarasi Chandramogan was hitting it off with a guy she met, until he confessed that his mother had asked him: "What if you get married to her and have a child with autism?”

The 34-year-old, whose brother has the condition, knew there was a chance of that happening. But it didn't make her feel any less taken aback or sad. 

“It became one of the reasons for myself to delay having a child now actually. There is a sense of fear from that incident,” she said.

This experience from over a decade ago was no one-off. Ms Chandramogan had to deal with years of ghostings and misaligned expectations, until she finally met her current husband.

“It (was) also a deal-breaker for me when they start showing signs that they don’t really care about my brother," she said. "They don’t ask how he’s doing or are not interested in interacting or bringing him out.” 

Ms Chandramogan, a freelance behavioural therapist, had long decided that she would take care of her elder brother, 37-year-old Balamurugan Chandramogan, for the rest of her life.

Seven years ago their diabetic mother had to undergo a below-the-knee amputation that left her wheelchair-bound, and in 2023 their father passed away unexpectedly in his sleep - making Ms Chandramogan the main caregiver in the household.

She once explored placing her brother in an adult disability home, but the long waiting lists and overwhelming “sense of guilt” made her reconsider.

“I’ll ask myself why I’m not able to do enough for him that I have to turn to homes for help," she told CNA. "And I feel sad knowing he will be there for a long time with strict visiting hours, and I’d worry if he’s being well taken care of.”

Her brother has the cognitive age of a three- to four-year-old, and can perform basic daily functions like showering, eating and wearing clothes. But the likes of handling money, developing a sense of safety and understanding social cues remain a challenge. 

"I know his medications, how comfortable he is feeling and even his spice tolerance when he comes to food,” said Ms Chandramogan. 

“So it’s a mixture of being the younger sibling, the older sibling and the parent at the same time."

"WHY COULDN'T I HAVE A REGULAR OLDER BROTHER?"

It wasn’t always smooth sailing for Ms Chandramogan, especially when she was a teenager trying to carve out her own path. 

“I was always rambling on about why this was happening to me and why I couldn't have a regular older brother,” she said, adding that she was even bullied by others who thought she was lying about her brother to get attention.

While going through puberty, her brother had more aggressive meltdowns, and would leave his sister with bite marks on her arms.

Today the siblings are closer than ever.

“Bala starts everyday as a reboot. Even when we’re frustrated at each other, we’ll be back to square one the next day like nothing happened. I’m thankful that I don’t have to deal with grudges, like other siblings might have to,” said Ms Chandramogan.

Her brother's friendly nature, bright smile and 1.81m stature have also earned him the moniker of “calm giant” in the family.

Ms Chandramogan still worries whether her brother will ever be independent in his daily living, and she hopes she'll be able to take care of him for the rest of his life.

To get some respite from the stresses of caregiving, she turns to good food as a "pick-me-up" as well as running and going to the gym.

“Taking care of Bala means taking care of myself, because I need to be healthy and strong enough to be able to care for him,” she said.

Financial concerns are also at play, ever since she made the switch from full-time to part-time work to better manage the caregiving needs of her mother and brother.

But the load isn't entirely on her shoulders. Her husband of two years has made an effort to learn more about her brother and to accompany them for medical appointments. 

“He moved in and started helping out in the house, and understood the levels of caregiving he can afford to do," she said. "So if I’m giving my 80 per cent, he’ll give his 20 per cent and we try to interchange depending on our schedules.” 

As for what the couple want for themselves, that painful memory from Ms Chandramogan's dating past still lingers - though she revealed she would consider having a child in five years. 

“If I’m going to have a child, how would I go through the pregnancy while dealing with Bala? Will he understand the pregnancy? Will he be calm when the baby is here?” she asked.

“These are the fears that I have."

CAREGIVING OBLIGATIONS

Not all siblings would take on a caregiving role as willingly as Ms Chandramogan has, said Ms Amber Lim, clinical psychologist at Reconnect Psychology & Family Therapy. 

She said that while families with a close relationship do it out of love, many millennials might feel forced into it instead.

“While most of our parents will ask us to focus on education and jobs, these siblings need to balance their aging parents, the care needs of siblings with special needs, and worry if their siblings are being well taken care of.” 

“Those that feel obligated can often feel a sense of loneliness and helplessness, compared to someone who is well-supported,” Ms Lim said. 

Ms Shireen Yeo, founder of sibling support group Sibs Unite, said it was important for caregivers to share their struggles with other members of the household if possible, as well as people outside the family. 

“For some of us, it’s the only safe space where we can talk about experiences that other people might not understand,” she said. “There is an internal desire to meet people that can resonate with their struggles.” 

A CLOSE BUT CHALLENGING RELATIONSHIP

For 29-year-old caregiver Rachel Boey, a source of support, advice and training has been the Enabling Services Hub at Tampines, run by disability agency SG Enable and the SPD charity.

Heading to the centre for activities is also the favourite part of the day for her sister Rebecca, who's younger by a year and has hydrocephalus and an intellectual disability among other conditions.

For now, Ms Boey and her parents take turns to look after her sister, teaching her to independently do things like buy food or take the elevator, as well as to understand social cues.

But she knows that the responsibility will one day fall entirely on her.

"One fear is that it’ll (become) a strain for me to take care of both her and my parents,” she told CNA. 

Ms Boey did think about placing her sister in an integrated facility for special needs adults, but her boyfriend of three months advised her against it. 

“It didn’t sit right with him and it felt like putting your parents in an old age home when you are still capable of looking after them,” she said. “So he suggested for our future house to have a room to accommodate her.”

This act alone made her thankful that the 15 blind dates she had over the last three years were unsuccessful. 

Like Ms Chandramogan, Ms Boey has had challenges putting her sibling’s needs before hers. 

Friends used to look at her sister differently and exclude her from activities. Ms Boey would then try to make up for it by spending more one-on-one time with her.

But their closeness also meant it was difficult to find peace and quiet when the elder sister needed it, especially when it was time to study.

“My work desk is in the bedroom we share, but she would want the room to herself during the day. So I’d have to use the kitchen table," she said, adding that there were times she had to leave the house altogether.

"I would try to accommodate because she may even throw tantrums if I don’t.” 

Such meltdowns remain a common sight today. Ms Boey explained that her sister can often be very insistent on things going her way, and has the “stamina" to lash out for an entire day.

“All these years, there have been many instances of breakdowns for each of my family members. We get really pushed to the breaking point.”

She said her faith tides her through stressful periods. Reading the Bible and spending time at church helps reset her mind to be a more patient and understanding caregiver, said Ms Boey.

Sibling squabbles aside, the sisters evidently have an endearing relationship, with Rebecca constantly holding Rachel's hand and hugging her throughout this interview.

The younger sibling was also far more receptive to her elder sister's instructions, compared with other family members.

Ms Boey counts this as a blessing, as she plans for a future including and involving her sister.

There is some degree of confidence, having picked up valuable lessons from her parents. But worries over how she might cope financially, mentally and emotionally will not dissipate anytime soon.

“Even though we’re close, I still don’t understand her fully and the best way to help her," Ms Boey admitted.

"But having a sibling with a disability has built my character and drive in whatever ambitions I try to achieve. And just knowing that I’m making a difference in her life motivates me.”