Facing mortality together

AMALIA had never considered the possibility that she would not see her father again after that night. That kind of idea did not seem plausible. Hospitals were havens of healing, where the sound of ‘beeps and boops’ muffled the sick people’s cries.

However, there was something more sinister about this clinical citadel – a tangible wasting away of life. Her father did not deserve this indignity. He deserved something more homely, more welcoming, more true to who he was.

Mostly, he deserved to live.

During their morning embrace, the sour tang of his breath, thick with medication, remained like a shroud, a sharp contrast to his usual aroma of pipe tobacco and pine.

His usual throne, the empty armchair, mocked her with its emptiness. A heavy shroud of silence covered the home, broken only by the grandfather clock’s incessant ticking, which served as a continual reminder of the minutes that were taken.

She thought back to their last conversation, a little break in the chaos of doctor appointments and prescription schedules. With a voice choking with fear, she had asked: “What’s the first thing you want to do once you’re better?”

He had closed his eyes, a small smile on his lips, the lines in his forehead deeper than they had been for a few weeks.

“I’d love to go hiking again,” he croaked, his voice weak, but full of that familiar spirit of adventure.

“That’s always been my wish.”

The shared dream of trekking, which they had been fostering for years, now appeared to be a terrible fantasy that would vanish into a lonely tomorrow.

Just three weeks away was her father’s 51st birthday, which he would not be celebrating.

He would not enjoy the rush of a backcountry adventure, hold her children as they grew up, or teach them the mysteries of the forest.

The hours blended into each other. The sterile room transformed into an echo of grief, its beeping a never-ending lament for a life lost. Amalia felt a strange distance as the light faded and the room filled with deep shadows. Her previously torrential sobs had dried up and been replaced by a debilitating numbness.

Amalia’s story is not unique to herself. The feeling of grief that overwhelms her is a normal human response to loss. In most cases, grief is associated with the death of a loved one.

But we can feel grief in more ways than just death. Divorce, amputations, or even losing a house to a fire can all cause grief.

In Amalia’s case, her grief started early, before the death had even occurred. Anticipatory grief is defined as the grief that we feel before the loss actually happens.

Loved ones afflicted with terminal illness, or even old age, are few such examples where anticipatory grief is most prominently felt by friends and family.

Grief and palliative care

Grief is intrinsic to both palliative care and the experience of loss, suffering, and pain. They are intertwined, with grief often prompting the need for palliative care and vice versa.

It is challenging to envision a scenario in palliative care without some form of grief, just as it is difficult to imagine grief without seeking some form of relief through palliative measures.

Palliative care exists because death is unavoidable.

Thus, it is important that palliative care is not only about improving the quality of life, but also the process of death.

In the palliative care scenario, it is evidenced that grief can manifest in many forms from various perspectives. From the perspective of the terminally-ill, they feel the loss of the future that they would have had without the illness.

For those who need to face the looming gaze of death, many things may linger in their minds. Regrets, bucket lists, wills, and yet, trying to come to terms with the inevitable can never be easy.

A sentiment shared with their loved ones, they ask themselves: “Why me? Why couldn’t it be someone else? What did I do to deserve this?”

Sometimes there is not always a simple answer to these questions – perhaps, even no answers at all. It is only human to seek answers and reasons in an attempt to make sense of things or justify the situation they are in.

Commonly forgotten as well is the grief of the professional caregivers. They are often exposed to deaths of the people whom they are caring for at the care-centres, which can take an emotional toll on their well-being.

This cumulative grief and the emotional weight of constantly being exposed to others’ trauma can create a sense of secondary traumatic stress in caregivers.

It is therefore important to try to understand what they are going through in order to better help those in need.

‘Neither neat nor linear’

When we talk about the grieving process, there are a lot of theories that come to mind. The most prominent one would be Dr Kubler Ross’s ‘Five Stages of Grief’.

According to her, the grieving individual will experience these stages as they feel grief.

• Denial: This is a first response, a way to shield yourself from the overwhelming pain of loss. You might say things like ‘this can’t be happening’, or simply feel numb.
• Anger: As reality sets in, anger can erupt. You might be angry at the person you lost, yourself, or the situation.
• Bargaining: You might try to negotiate your way out of the loss, making deals or promises in exchange for a different outcome.
• Depression: This is a period of sadness, withdrawal, and despair. You might experience a loss of appetite, trouble sleeping, and a general lack of interest in activities you once enjoyed.
• Acceptance: This does not mean you are happy about the loss, but it signifies an understanding and acceptance of the reality. You learn to live with the loss and find a way to move forward.

However, one of the most common misconceptions about this theory is that grief is neither neat nor linear. It is very personal and it does not follow any timelines or schedules. You may cry one day, become angry on another, withdraw, or feel empty out of the blue. None of these things are unusual or wrong.

Another interesting theory on grief is a model created by Dr Richard Wilson’s ‘Whirlpool of Grief’, which helps grievers visualise their experience through a diagram.

The whirlpool of grief is a metaphor used to describe the emotional turmoil and disorientation that follows a significant loss. It captures the intensity and unpredictability of the grieving process.

The depiction of the ‘River of Life’ in the upper left corner of the illustration symbolises life before experiencing loss. Each individual’s journey through these waters is unique, ranging from tranquil and steady currents to turbulent rapids or meandering paths along murky shores.

When a loved one passes away, your metaphorical canoe begins its descent down the waterfall. Trying to grasp the harsh reality, feeling lost in a haze, or experiencing numbness are common reactions.

Eventually, the waterfall guides us towards a new stream of life.

Along this journey, a variety of emotions emerge. Anger, confusion, disorder and denial may surface or not. Physical symptoms like fatigue, clumsiness, appetite changes, or bodily discomfort may manifest.

Sometimes you might find yourself stranded on the banks of the river, feeling stuck and unable to move forward. This can be a phase of intense longing and reminiscence.

The sharp edges of the rocks represent unexpected waves of grief that can hit you even after a significant amount of time has passed. These can be triggered by seemingly mundane events or reminders of your loss.

As time progresses, the whirlpool’s hold on you weakens. The emotions may not disappear completely, but they become less intense and more manageable. You start to navigate the river of life with the memory of your loss, learning to live alongside it instead of being consumed by it.

There is no set timeframe for escaping the whirlpool. Everyone grieves differently. But the image suggests that eventually, if handled properly, you reach calmer waters where the memory of your loved one can coexist with a renewed sense of purpose and joy in life.

How to help those in grief?

Grief is a deeply personal experience. No two people will experience the exact same grief as each other even if the circumstances may be similar. So coping mechanisms that may work for one person might not work for another.

However, giving support is something anyone can do, but is commonly overlooked.

• Acknowledge their loss: Do not shy away from mentioning the deceased or avoid the topic out of fear of upsetting them. Let them know you are thinking of them and their loved one.
• Listen actively: Be a shoulder to cry on and a patient listener. Do not interrupt or try to fix things. Just be present and offer a safe space for them to express their emotions.
• Validate their feelings: Let them know their feelings are normal and okay, even if they seem intense or confusing. Phrases like ‘it’s okay to feel sad’ or ‘I can understand why you’re angry’, can be comforting.
• Be patient: Grief is a process that takes time. Do not expect them to ‘get over it’ quickly. Be there for them in the long run and offer support for as long as they need it.
• Avoid clichés: Phrases like ‘be strong’ or ‘they are in a better place’ do not really help, and are instead dismissive.

‘Circle of Support’

The ‘Circle of Support’ depicts concentric circles surrounding the different categories of social support in an individual’s life.

The innermost circle represents family and intimate partners. This circle signifies the closest relationships that provide the most significant social support. These would be the first and closest people an individual can reach out to when it comes to supporting them.

This circle is the most significant as family and intimate partners share a bond and memories that no other circle has.

The two middle circles encompass informal sources of social support. The circle closer to the centre represents friends and informal support services.

Informal social support can come from close friends, neighbours, colleagues, or acquaintances. These include peer support from social services or non-professional non-governmental organisations (NGOs).

Finally, we have the outermost circle representing formal support services. These are typically organisations or institutions that provide professional help, such as clinics and hospitals.

Centre for grief, bereavement, and trauma

Some individuals are not able to obtain support from family and friends for various personal reasons; hence, why they would seek other services.

Dee Hati Grief Centre is one such centre, established to be a haven for those who are grieving and suffering from loss by providing them a safe place to grieve healthily without being judged.

Run and managed by Yayasan Dee Hati, it is a newly-incorporated not for profit organisation based in Kuching with the main purpose of running the centre.

The intention of establishing the centre in Kuching started due to the untimely passing of Nur Diyana Datu Zuraimi. The late Diyana was altruistic and had a magnanimous heart for her fellow human beings.

She was always passionate about assisting and giving back to society. Hence, by establishing the centre, it was the family’s way of honouring her unequivocal zest in helping others and in so doing, channel their grief towards building a legacy based on her precious memory.

The main service provided by the centre is free peer grief support to anyone who is going through grief, whether it be from the death of a loved one or any other form of loss.

Peer support is a session where two or more people meet up and talk about their grief and experience. It allows grievers to be vulnerable and open up.

Dee Hati Grief Centre also carries out grief circles as well as various therapeutic coping activities such as ‘Grief Informed Yoga and Memorialisations’.

Dee Hati is also a firm believer in advocacy work and strife to educate the public on healthy grieving through various methods like talks, webinars and events.

— Mohamad Nazwan is Dee Hati Centre for Grief, Bereavement and Trauma general manager, as well as a co-founder of Yayasan Dee Hati. He previously studied architecture and was in the construction industry for over eight years. While grieving following tragic events, he and those closely-related to the event found that there were no grief centres in Malaysia like those overseas. He became a co-founder for the centre to give those grieving the opportunity to grieve safely and healthily.

Part of his role in Dee Hati is to manage the day-to-day operations of the centre as well as to ensure the professional conduct of grief support providers. Mohamad Nazwan also helps advocate for and educate the public on the importance of supporting others in grief by actively engaging with the community through public speaking engagements, media appearances, and participating in various awareness campaigns.

Go to deegrief.com.my to know more.