What is anticipatory grief among caregivers? How do you tell it’s not burnout? Can you make it more bearable?

Why are you already grieving over a terminally ill loved one when he or she is still around? How is it different from after-death grief? A free guidebook by social service agency Allkin Singapore addresses those questions.

I have two ageing parents in their late 70s, who are still somewhat independent. Between them, they have survived colorectal cancer, COVID-19, kidney stones, knee replacement surgeries, and are currently trying to surmount high blood pressure, prediabetes and technological hurdles.

Everything’s been status quo so far (touch wood) but with each passing year, I see the light in their eyes dim a little more, their steps less certain, and their grasp on reality more tenuous. These changes, however small, remind me about the inevitability when their doctor hands me a diagnosis for something terrible like cancer or dementia.

And for all the healthcare aid Singaporeans have access to, I can't outsource the emotions, of which there is a big, mixed bag-full. Mostly, I am saddened by the eventuality of things to come because no matter how warmly tethered or tumultuous a parent-child relationship is in life, in death, the umbilical cord would forever be cut. I am not sure if I'll ever be ready for this final chapter.

WHAT IS ANTICIPATORY GRIEF? HOW IS IT DIFFERENT FROM THE GRIEF OF LOSING A LOVED ONE?

For those of you thinking, why worry now when everything’s still okay, I am aware that it’s premature for me to walk around with this stone around my neck. Perhaps I have my father’s worrier trait to thank – and anticipatory grief.

“Unlike grief after a death, which often involves coping with the finality of loss, anticipatory grief involves the challenge of dealing with ongoing uncertainty, impending separation, and feelings of helplessness,” said psychiatrist Dr Lim Boon Leng from Dr BL Lim Centre For Psychological Wellness.

“It includes mourning what will be lost and preparing emotionally for the inevitable,” said Dr Lim, who also chairs the Mental Health Sub-committee at Allkin Singapore, a social service agency, which launched the anticipatory grief guidebook, Grief Before Loss, this year. (You can download the book for free here.)

“Caregivers with anticipatory grief possibly feel a mixture of feelings such as sadness, anger, fear, dread, denial, guilt and loneliness,” said June Tang, the lead psychologist with Allkin Singapore’s Mental Health Service.

“They can also have physical and cognitive symptoms, like poor sleep and appetite, and difficulties focusing on other areas of their lives and constantly thinking about their impending loss,” she said.

What might further differentiate anticipatory grief from after-death emotions, said Tang, is oscillating between feelings of hopelessness and hopefulness. “Caregivers may feel confused as to why they are experiencing grief when their loved one is still very much alive and with them. All these could lead to them feeling an increased sense of emotional instability.”

Unlike post-death grief, anticipatory grief can also “lead to feelings of isolation since it’s often less recognised or understood by others”, said Lim Pei Wen, a social work-trained senior programme executive with Allkin Singapore’s Senior Service.

It is a situation experienced by many in Singapore. “Our ageing population means that many people are caring for elderly parents or family members, leading to prolonged feelings of anticipatory grief, particularly as they confront the reality of their loved one's declining health,” said Dr Lim.

ARE THERE STAGES IN ANTICIPATORY GRIEF FOR CAREGIVERS?

If you’re thinking of the stages of grief identified by famed psychologist William Worden in Tasks Of Mourning, anticipatory grief doesn’t always follow like so: Denial, anger, bargaining, depression and acceptance.

Instead, the emotions “tend to fluctuate and overlap, making it more complex than grief following a loss”, according to Dr Lim. “In Singapore's context, caregivers often struggle with feelings of duty and guilt, while balancing caring for a loved one and personal responsibilities,” he said.

Tang agreed that “no two persons experience anticipatory grief in the exact same way”. But she countered that you may go through the following four stages, though not linearly. “Not everybody will go through these phases, and some people might skip some of them.”

Stage 1: Accepting that death is unavoidable. Sadness and depression are typical at this stage.

Stage 2: Concern for the dying person. This might present as feelings of regret, guilt over past interactions and worrying about the dying person.

Stage 3: “Rehearsing” death. At this point, the dying person’s last wishes are conveyed, friends and family start to say their goodbyes, and funeral arrangements are made.

Stage 4: Imagining the future. You start to think about what life would be without the dying person.

HOW DO WE TELL IF IT’S ANTICIPATORY GRIEF OR CAREGIVER BURNOUT?

"Anticipatory grief involves feelings about future loss, while caregiver burnout occurs when someone feels emotionally and physically overwhelmed by the demands of caregiving itself," explained Dr Lim. Signs of anticipatory grief might include withdrawal from social activities, prolonged sadness, or tearfulness when thinking about the loved one's future, he said.

“In contrast, caregiver burnout often manifests as exhaustion, irritability, or feeling trapped by caregiving duties. Caregivers experiencing burnout may even become emotionally distant and cold,” he said.

While anticipatory grief and caregiver burnout are distinct, continued Dr Lim, “both can occur simultaneously, and it’s important to distinguish between them to provide appropriate support”.

For example, said Tang, “we often find the pain of losing someone intolerable, and in our attempts to shove away those challenging feelings, we might start to focus on doing more and more to care for the person, and end up feeling exhausted and burned out”.

CAN THERE BE POSITIVES FROM ANTICIPATORY GRIEF?

The silver lining is, yes, there can be, said Lim, who was inspired by her personal caregiving experience with her grandmother as well as the “sharp increase in the number of caregivers reaching out for support” to write Grief Before Loss with her team.

One of the benefits that the book highlighted is that anticipatory grief can strengthen communication and prevent future regrets or confusion over unspoken wishes. “It opens the door to resolve misunderstandings and ensures that final wishes are honoured,” said Lim.

Another positive is the opportunity to let go. “Anticipatory grief offers a chance to be present and provide comfort,” said Lim. “It creates space for all parties to express that it’s okay to let go and help the process to feel less overwhelming.”

In Singapore, where the concept of filial piety is highly valued, noted Dr Lim, this period of grief can help families “to fulfil their roles as caregivers and ensure their loved ones are cared for”. “Anticipatory grief can also encourage meaningful reflection, allowing you to cherish the present moments and better prepare for the eventual transition," he said.

WHAT CAN WE DO TO MAKE ANTICIPATORY GRIEF MORE BEARABLE?

“It is helpful to understand that anticipatory grief is a process and be patient with yourself,” said Tang. “There is no pressure to ‘get over it’, and it is normal to have good days and bad days.”

Tang reminded that self-care is important before you can add a counter-balance to the weight of grief and be there for your loved ones. “You do not need to go through it alone and it is okay to turn to others for help, be it to ask for practical assistance or emotional support,” she said.

To start, you can help yourself by creating a safe space for you to express your feelings and have your emotions validated, suggested Ruby Xu, a psychology-trained programme executive with Allkin Singapore’s Mental Health Service.

This could mean talking to someone who understands or has experienced anticipatory grief, she said. “Having an open dialogue about the difficult emotions that you are facing can reduce feelings of confusion and fear.”

Self-care activities, such as taking walks, practising mindfulness, or engaging in hobbies, can provide moments of respite, added Xu.

WHEN DO WE NEED PROFESSIONAL HELP?

It is important for caregivers to address their feelings when they become overwhelming to the point of disrupting daily life. “For example, when you find that you cannot focus on work, lose interest in activities that you usually enjoy” or you “have prolonged insomnia and begin to isolate yourself from others”, said Tang.

“Anticipatory grief does sometimes involve intense feelings,” she continued, “but when you find that you have been experiencing these feelings for a prolonged period of time without signs of relief or coping, it is likely that you would benefit from seeking support.”

Definitely look for immediate professional help when you start to experience thoughts of self-harm or suicide, she added.

The avenues you can turn to include palliative care teams in hospitals, hospices and organisations such as HCA Hospice Care, said Dr Lim.

“Psychiatrists and psychologists can offer treatment for any resultant mental illness and psychotherapy to help process grief in a healthy way,” he said. “Social workers can also provide counselling or therapy, and assist caregivers in finding resources to cope with the challenges ahead.”