Three years ago, Yvonne lost her mum to cancer.
She was only a secondary school student when the doctor first diagnosed her mum with breast cancer. The cancer went into remission after chemotherapy treatments and a mastectomy, but eight years later, it came back. And it was after that relapse that the labour of caring for a loved one suffering from a debilitating illness began to take a toil on Yvonne.
The period of five years after that was one of “the most traumatic period, because I was still doing my work.” That was also a period that saw Yvonne’s sister gave birth, and the heavy responsibilities her sister had with nursing a newborn meant that Yvonne had to step up as the main caregiver to her mother, whose condition was deteriorating by the day.
“Towards the end, her treatment options sort of dwindled down. She tried quite a few treatments but developed a tolerance. It came to a point where there was one option left.”
The cancer cells had spread to her mother’s spine when they were told that the only option left was an intrathecal chemotherapy: “Which means it has to go through either the spine at the end, or they have to put this ‘tap’ at her head and I think for her, that was too much. She didn’t want that.”
Her mother was adamant about not going for that treatment. In a sense, that meant that Yvonne could only bring her mum home and watch her condition deteriorate—there was nothing much else that could be done medically.
It wasn’t hard for Yvonne to accept her mother’s death when she passed five years after the relapse, as it was something that they foresaw, “but I felt like I lost my opportunity to reconcile with her.”
“I don’t think we knew how to talk about reconciliation, especially when she was sick. It was never the right time to bring up past grievances.”
When one is dying, the emotions that accompanies being aware of one’s mortality can make it very difficult to discuss. The same goes for their loved ones, who will deal with a confusing mix of sorrow, despair, and helplessness as they watch their loved one get weaker by the day. For Yvonne, what stuck with her is not being able to have ‘that conversation’, or to properly plan her mother’s last moments together.
“I feel like it’s important to talk about all aspects of life, and you can do that even when there’s no sickness,” she added, as she shared about why she volunteered with Both Sides, Now, a community engagement project about what it means to live well, and leave well, after her mum’s passing.
The Importance Of Talking About Death
What if your mum is suffering from cancer and has a 50% chance of surviving if she goes for treatments, but she chooses not to go for the treatments?
“It’s too expensive,” she tells you. “I’ll also have a 50% chance of dying, so, what for?”
However, not going for treatments also means that she has a zero percent chance of surviving.
Do you respect her choice, knowing that she is dying, or do you force her into going for the treatments?
This was a moral ambiguity that was very similar to what Yvonne faced, and it was a scenario that was presented at an interactive theatre show at the recent BSN event at Telok Blangah. Although hypothetical, it was a reflection of dilemmas that many people face in dealing with the last stages of their loved one’s life.
The stakes are so high because when a loved one passed away, it’s too late. Too late for last goodbyes or last acts of love.
Those were the points that ArtsWok Collaborative’s Ngiam Su-Lin, Creative Producer of BSN, brought up when she highlighted the importance of talking about death.
“Often, when illness strikes and it’s terminal, it’s too late to plan. It can result in a lot of suffering, and when people pass on and there’s no closure, it can cause a lot of grief, loss, and conflicts in the family.”
We all die one day, and we know that.
We are aware of how unpredictable and transient our life is, but we never talk about it. Perhaps we do occasionally, when we joke about the funeral we want for ourselves with friends. However, it is the details of what we want in our last moments that we miss out.
“We talk about giving birth and preparing for all these milestones like birthdays and first jobs, but how come when it comes to dying, we don’t talk about our fears, desires, and plans?”
Dying With Dignity With An End-Of-Life Plan
Accompanying every death are intense degrees of pain, grief, and loss—which was what Drama Box’s Artistic Director Kok Heng Leun, who is also Artistic Director of BSN, stressed when he explained the motivations behind BSN.
“People associate [death and loss] with not moving on, not going forward. But loss is such an important aspect of life.”
However, the fear of an unknown and the suffocating emotional pain makes it hard to talk about it. And mortality is such an awkward topic to bring up. It definitely isn’t something you just casually bring up to your parents like so: ‘Ma, pa, how do you want to die?’
The less we talk about it however, the more difficult it will be when a death occurs, because when you look at it objectively, it is the lack of preparation that makes it difficult.
I particularly remember this lady (presumably in her thirties) at a previous BSN event, who amidst trying to hold back her tears, shared how she struggled with seeing her father in the last moments in his life after a sudden medical emergency. She struggled because the family never found out what he really wanted for his last moments. They never got to speak to him about it because it was just too sudden. In a way, it was a closure that she never really had, as she will never know if they did the right thing or if they did enough for him before he left.
Our society as a whole lacks the knowledge in conducting such discussions. We see death and dying as something too grim to seriously discuss about. Yet, it is such a critical conversation to have with the most important people in our life. Because if we never have such conversations, we will never truly know what our loved ones want for their last moments.
It goes down to the smallest details that you never knew you had to know until it is way too late: How they want to be remembered; what kind of flowers they want at their funeral; the kind of care they want when they are in deep pain; or even questions like whether to pull the plug or not when the time comes.
Likewise, if anything were to happen to us, our loved ones will never know what we wanted for ourselves.