I gave up my dream at 29 to look after my sick mom - three things no one tells you about caring for a relative

Daily Mail​

a day ago

Simone Heng was at the peak of her career in Dubai when she got a phone call from her sister while she was working a giveaway at the mall for her radio job.
'Simone, where are you?' her sister asked from Perth, Australia. 'I think you should come home.'
Her mother had a stroke related to her rare genetic condition and was suffering from paralysis. They had found her mother lying at the bottom of the shower. They had no idea how long she had been there.
'I'll never forget that,' Simone, 41, told Daily Mail. 'I remember just that guilt of like - how long was she at the bottom of the shower? How long until someone knocked the door down?'
As she hopped on a flight from Dubai to Perth, she knew her life was about to change. That trip in 2013 was only supposed to be two weeks long, but when she looked at her mother lying in her hospital bed, looking gray with eyes unable to focus and suffering from arm spasms, she knew things were not going to get any better.
'I remember seeing her in that state and going: "Your life is going to change forever now,"' she told Daily Mail. 'I'm the shield now, and I think that's really when we, as children, become our parent's parent, and the role flips.'
At 29, Simone, an international broadcaster who worked at Virgin Radio Dubai, embarked on a 1.5-year journey of caretaking, one filled with such isolation and grief that it knocked her off her feet.
Now, she has penned a book called Let's talk About Loneliness and hopes to warn others of the unexpected toll of caring for an ill parent.
Simone packed her bags and headed back home to Perth while they moved her mother in a care facility.
Despite the help, Simone and her sister were left to deal with their mother's belongings at her home and figure out the logistics of unexpectedly having to care for their parent.
The sisters split the work. Her sister would focus on the logistics of care - physiotherapy costs, arranging massages, and subsidizing help - while Simone would take care of the emotional aspects, such as bringing her mother happiness.
But the first obstacle Simone faced, however, was being in charge of downsizing her mother's home.
And it's now the foremost thing she'd tell others going through the same thing: 'Number one, if your parents are still cognitive and you can convince them to downsize, please do it.
'The last thing you need is the logistical nightmare of cleaning that house when they're already incapacitated.'
Despite her mom being in a wheelchair, her mind was there and it held fast to her beloved items, causing 'friction' between the mother and daughter.
'The brain hadn't degenerated yet. The body was in a wheelchair, but the brain was fighting about the belongings and things like that,' Simone told Daily Mail.
Your life is going to change forever now. I'm the shield now, and I think that's really when we, as children, become our parent's parent, and the role flips
Author Simone Heng
The second thing she found herself unexpectedly experiencing was watching her mother go from a fully capable adult to needing the same level of help as a child.
'I saw my mom's nappy being changed in front of me,' she said. 'You have to prepare yourself for when that change happens, when they become the baby - especially if you have very authoritarian parents like I did with mom.'
'You emotionally need to prepare yourself for that loss of dignity and watching them kind of melt down. And I wish I had been prepared for that. I wish someone else had said: "Look, you need to just watch out for this."'
But her biggest problem, and third thing she warns people about when they are beginning to look after a relative, is the isolation of caregiving.
She woke up every day thinking only of her mom and her needs. As time went on, Simone lost herself. She stopped putting on makeup and stopped caring how she looked.
'By the end of the one and a half years, I just completely didn't even look in a mirror anymore,' she said.
And for Simone, who wasn't even 30 at the time, she felt so alone in the world of caregiving.
Only now, as her friends enter their 40s, are they beginning to experience what she went through a decade ago.
And unlike death, where the heart heals with time and the physical burden gets lighter, it doesn't with chronic illness.
'You see it at the beginning with - when dad passed away, people brought food. They understood that someone had passed away. And eventually it's finite,' she explained to Daily Mail.
'When someone has that long-term chronic illness, there is really no endpoint. And so the community is amazing at the beginning, but really long-term, it's on you as the children.'
And her own family perceived her as young and vibrant and fully capable of handling the pressures and duties of caretaking.
But all it did to her was make her feel 'incredibly, incredibly lonely.'
She still, to this day, feels guilt for the resentment she felt at the time and grieves for the version of herself that she lost.
In Dubai she was a highly successful broadcaster whose face was easily recognizable in the emirate. She once featured on a billboard for Dove outside the 7-star Burj Al Arab hotel.
'I grieved it for years afterwards. I think in the moment you're just in fight or flight, and I was culturally conditioned to think that this is what good Asian daughters do, and this is unquestioned,' she said.
'And it had been taught to me from the time I was young. My mom had said it to me over and over again: "You know we don't put our people in homes." This is what you do.
'And so I was unquestioning in that kind of obedience of programming. But it wasn't until I realized how much the whole experience changed me at a cellular level, and when I went back to work.'
Simone fled Perth for Singapore after a year and a half. She had hit her breaking point and a psychiatrist told her she had to leave before it was too late.
'My mental health got really bad,' she said. 'The psych just said: "You know you're not born to do this," and that's why [I left].
'I still carry guilt this day that I'm not made of better stuff, more selfless stuff, and he's like: "You know, you've got to put the face mask on. You're a creative, and you need to go back to a place where you can do that."
She chose Singapore due to its proximity to Australia, allowing her to return every 90 days to visit her mother.
Her sister, who still lives in Australia, now does the brunt of the caregiving, but for Simone, this system works better.
'It's still difficult, you know, undoing that guilt and that programming,' Simone told Daily Mail.
From 2015 to 2017, Simone went to therapy to work through the experience and was able to come out on the other side.
Now, she advises children who become caretakers to join support groups and to give themselves grace for the guilt they feel.
'Give yourself grace,' she said.
Despite how difficult the experience was, it gave her a perspective that is now her 'north star.'
'No one is talking about their job, how much money they earn, like what watch they have,' she said.
'People are just pining away for human connection. And I think that that was very inspiring to the work that I do now, we're really just here for connection and a good time.
'And that, that I carry every day. It kind of is the north star of how I make all my decisions.'