“Grief is perhaps the last and final translation of love. This is the last act of loving someone. And you realise that it will never end. You get to do this—to translate this last act of love for the rest of your life.”
—Ocean Vuong, reflecting on the aftershocks of grief in Time Is A Mother
I grew up in the warm cradle of my grandparents’ house. I have every inch of it mapped in memory, how the walls were suffused with incense and ginger, the TV always flickering in the background, tuned to a channel streaming Cantonese period dramas, my grandfather sitting in his designated chair in the corner of the living room watching over us while we played, and my grandmother bent over the kitchen counter peeling long beans into a green colander. This was a staple scene in my childhood.
When I was thirteen, my grandfather was diagnosed with dementia after a stroke. At first, it was a smattering of small details here and there that he couldn’t recall. One day, he left the house to embark on his daily bus ride through Singapore, and forgot the way home. Ten years later, my mother would show him a picture of his grandchildren and he would smile, with not a single trace of recognition in his face. A few years after the diagnosis, he moved out of the apartment and into a nursing home. Around that time, my grandmother, too, began to develop dementia from the loss of her life partner. Visits to their house grew sparser and sparser.
How do you reconcile grief and loss when a death hasn’t happened yet?
This phenomenon is known as two things: ambiguous loss and anticipatory grief.
Ambiguous loss is the profound sense of loss and sadness that is not associated with a death. This is usually characterised by the loss of an emotional connection even though the person is still physically present, or a lingering emotional connection without a physical presence to validate it. It all boils down to a lack of closure or saying goodbye without leaving. This can be experienced through blocked cognition, difficulties with coping or moving on, feeling stuck in the grief process, or persistent sadness for uncertain reasons.
Types of Ambiguous Loss
Sometimes, ambiguous loss follows a major change, regardless of whether it’s a positive or negative experience. Most of these situations can be out of our control. There is a common sentiment in which a relationship might be impacted and substantially changed due to the circumstances, leaving us thinking, “I want the person they used to be back,” or, “I want to be the person I used to be before all this change.” Both sentiments convey a yearning or a deep desire to bring back what you have lost, but the understanding is that you can never go back.
Both my grandparents are still alive, but my grandfather has forgotten who I am completely and my grandmother can’t remember her recipes or the nicknames she assigned us as children. The forgetting, in itself, is a kind of death. My grandparents are still alive, but I feel an overwhelming grief when I think about them, how many years they have left in them, and how it feels like I’ve already lost parts of them that will never come back.
Sometimes, there are situations where relationships are forced to be redefined. Life cycle transitions, such as a birth, a marriage, the shift from childhood to teenagehood, coming into new adulthood, moving away from your family home, moving overseas, or starting a new job, can bring about a vague sense of loss, even if the experience is positive. The change in family structure or members’ roles may not be easily adjusted to, and with the change comes a sense of loss, as members are required to reconfigure parts of their identity to accommodate the transition. In this case, the sense of loss lacks a clear definition, leading to more discomfort, as most associate ‘loss’ with more negative experiences. Witnessing your siblings transition from baby-faced children into rebellious teenagers can be both emotional and jarring. Loss accompanies permanent change. Your younger sibling will never go back to being the small, wide-eyed kid following you around the house again, and you have to live with that.
On the other hand, living with an illness, or being the caregiver for someone with an illness, can catalyse changes in personality. You may not be able to pinpoint the loss, but you’re aware that you’re no longer the same person you used to be before this. Perhaps the illness or caring for someone suffering from it, can take away parts of you and replace them with parts you don’t recognise in order to adapt. Sometimes, this ambiguous loss is accompanied by grief, as you anticipate that the quality of your life may decline again. Ambiguous loss can be experienced as a state of “frozen” grief, or anticipatory grief, in which the bearer understands that the inevitable end is coming, even if they’re not sure of the exact date.
Anticipatory grief can overlap with ambiguous loss, or it can eventually develop into ambiguous loss.
Anticipatory grief occurs before death, and is defined as the sorrow and anxiety experienced when you are expecting someone to die or a loss to happen. This can be both stressful and constructive. While knowing that someone may die soon allows for preparation time to cushion against the impact of the loss and to sort out the time spent with the dying individual, it may lead to a withdrawal in the relationship or an early breakdown in the relationship that lessens quality time spent together. Sometimes, it may be experienced with the potential loss of a job, in which you are aware of an oncoming termination, even if it hasn’t been announced yet. Or if you or a loved one suffers from a health condition. Anticipatory grief may even occur when things are good, as there is a dreadful expectation that one’s health could start deteriorating again.
A qualitative study on making meaning of anticipating the death of a loved one suggests that palliative caregivers face this ambiguous loss and anticipatory grief for their terminally-ill loved ones by “maintaining optimism, strong cohesion with their partner and a sense of joint destiny” (Bilić et al., 2022). They also tend to repress their own feelings to focus on living in the present, actively providing care for the ill spouse and family (Bilić et al., 2022).
Now, I question, how do I live with this grief? What am I going to do with all these memories rooted in me?
Coping with Ambiguous Loss and Anticipatory Grief
Another study examined the process of emotional acceptance of loss and separation during the COVID-19 pandemic, unravelling across a spectrum from complete denial to spiritual acceptance. These sentiments ranged from, “I can’t accept it [separation], it’s inhumane”; “Accepting that one is doing their best under the circumstances”; “I am not a religious person, but I am spiritual and I feel acceptance when I am in nature” (Paun et al., 2022).
Ambiguous loss is suggested to be a liminal or transition state. Boss (2016) suggests normalising the ambivalence during ambiguous loss and anticipatory grief, and leveraging the expectation that the loss will eventually happen to find meaning and new hope. The acknowledgement of loss in separation and tolerance of difficult feelings in this limbo transition state of “frozen” grief can be important to adapting to the loss. It was also suggested that dementia-specific interventions should focus more on resilience rather than closure, while also reconstructing identity and revisiting attachments.
Strategies to cope can include:
Sometimes, grief and loss can be invisible, with little tangible evidence or understanding of its source. Still, ambiguous loss and anticipatory grief are valid struggles that deserve the same empathy and compassion. Given time and the appropriate support systems, this grief can change shape and become more manageable.
I will always remember, with fondness, my childhood in association with my grandparents’ house, even if they no longer feel the same way I do about it. I translate my love into grief because, in some way, my inner child will always be there, playing on their living room floor under my grandfather’s warm and watchful gaze and listening to Cantonese TV while my grandmother braised chicken over the stove.
https://www.apa.org/news/podcasts/speaking-of-psychology/ambiguous-loss
Bilić, J., Skokandić, L., & Puljak, L. (2022). Anticipatory grief and experience of providing at-home palliative care among informal caregivers of spouses in Croatia: a qualitative study. BMC Palliative Care, 21(1). https://doi.org/10.1186/s12904-022-01093-1
Paun, O., Loukissa, D., Chirica, M. G., & Nowell, H. M. (2022). Loss and grief in the context of dementia caregiving. Journal of Psychosocial Nursing and Mental Health Services, 60(10), 7–10. https://doi.org/10.3928/02793695-20220909-01
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