Sally (not real name) found out a year ago that her father has cancer. Being his only child, she accompanies him to doctor appointments and has even moved back in with him to take care of him better. However, her father’s condition continued deteriorating and she had to witness her once lively and energetic father become a shadow of his former self. Although her father is still alive, Sally misses the man her father was before the illness- the man who would always crack jokes and tell her that everything will be alright. Although she is ashamed to admit, she sometimes wonders if it would be easier if her father just passes on.

Sally’s anguish over taking care of her terminally ill father is known as anticipatory grief (AG). AG is similar to grief in that it is associated with the loss of a loved one. However, when an individual experience AG, there is a sense of loss even though there is no physical loss yet. It occurs when the said loved one is still alive but there is underlying anxiety and fear that they might be gone at any moment. Having to take care of or witness a loved one succumbing to a terminal illness, such as cancer or Alzheimer’s would usually elicit AG which can be extremely stressful and more difficult to cope with than regular grief. Yet, not much is known about AG. Many assume that grief sets in only after the death of a loved one but grief experienced when a loved one is still alive can also be painful, arguably even more so.

Current Study

Coelho and colleagues (2019) interviewed family caregivers (FC) of patients with terminal cancer to find out more about their grieving process while they anticipated the death of their loved ones. They found 3 themes that were common to amongst FC who were dealing with AG.

1. Traumatic Distress

They found that watching a loved one gradually getting weaker from their illness can be rather upsetting and shocking. One participant highlighted how her husband’s illness made him unable to recognise her or have proper conversations with her. Witnessing her husband stark change made her feel as though her “husband is disappearing” right in front of her. Additionally, many also could not believe how “a person who was so strong” could become “so fragile”. Even when FCs have done their research on the illness, physically watching their loved one change so drastically in reality still shocked them.

Not knowing when their loved one’s condition may worsen creates a lot of anxiety for FCs. Many subjects were in a constant state of alertness as they believed that if they do not pay enough attention, the patient’s condition would decline. Subjects highlighted how they would feel an urge to regularly check on the patient and were gearing themselves for the worst every time they do so. Even for those who remain hopeful, the uncertainty of how the illness would progress still makes them constantly insecure and anxious.

Moreover, many subjects felt a strong sense of hopelessness and guilt when caring for their terminally ill loved one. FCs reported that they felt like no matter what they did, they could not help improve the patient’s condition or prevent the patient from the inevitable- death. Although, logically, terminally ill patients would usually get worse as time passes but knowing this does not prevent FCs from feeling any less guilty. Some interviewees also mentioned that they would start finding someone or something to blame for their loved one’s illness in order to feel less guilt. Though, this study found that when subjects tried to make the patients feel more comfortable rather than trying to cure them of their terminal illness, FCs tend to feel less helpless.

2. Separation Distress

The anticipation of death can be a very upsetting experience. As established, the process of watching a loved one pass on can be rather traumatic. It is, thus, not surprising that many subjects expressed that they want this taxing period to pass as fast as possible. However, it is only the patient’s death that can put an end to this stressful period. As one interviewee puts it, “If this is not forever, it’s because I’m going to lose that person.”. Another subject highlighted how the anticipation of death was so overwhelming that as much as it shamed him to admit it, he “just wanted his dad to die fast”. The internal turmoil of simultaneously welcoming and fearing death takes a great psychological toll on FCs. The guilt of wanting the stressful period to end while understanding that this means the death of their loved one further eats at those who are going through anticipatory grief. FCs are usually stuck by a huge dilemma as they are not prepared to let their loved ones go, however, in order for their suffering to end the patient would have to pass on.

Additionally, the decline of the patient due to the illness can cause FCs to mourn the relationship they once had with the patient, even if the patient might still be physically present. As the patient’s condition worsens and is unable to adequately communicate with the subject, an interviewee reported that he felt “alone, now that he does not have anyone to talk to”. Many also reported how they “miss the patient’s company”. Especially when there is a role reversal, such as when a child has to now take care of his/her parent, the loss of the relationship is arguably even more jarring. In these cases, the subject not only loses a confidant, but they also lose their own identity as a child whilst they take on new responsibilities as a caretaker. One participant mourned that when her father became ill, she can no longer turn to him, the “strong man, whom she have so often asked for help” anymore.

3. Emotional Regulation and Dysregulation

While traumatic and separation distress is rather unique to AG, emotional regulation and dysregulation issues are common in both regular grief and AG. Watching the process of a close family member or friend giving in to an illness can take a huge emotional toll on anyone. Many subjects emphasised how they would try to not think about the circumstance that their loved one is in, to avoid feeling the anguish caused by AG. Additionally, as many did not want their sick loved ones to be worried, they would further hide their anguish.

Participants who were experiencing AG also displayed many symptoms of stress and disorganisation. Physically, many had a loss of appetite and muscle tension problems. Also, worry and thoughts about losing the patient regularly pop into many subject’s minds and it was difficult for them to stop thinking about it. The emotional distress can escalate to a point where one feels exceptionally helpless and begin to have suicidal thoughts. Although many reported that they could not manage their emotions, it was found that most subjects were reluctant to seek emotional support as they believed that no one else could understand what they were going through.

Implications

When one grieves after a loved one has passed on, one mourns the loss of the person. A person is arguably not only made up of their physical body but also (and perhaps more importantly) their thoughts, character and the relationships they have forged over the years. By this definition, grieve should not only felt when a loved one physically passes away. Rather, grieving the loss of a person can also occur when one sees their loved one gradually losing their ability to think and forgetting about the relationships they have made. If you find yourself experiencing anticipatory grief, there may be some tips from part of another article written that may help you overcome this stressful period better. 

Reference. Coelho, A., Brito, M. D., Teixeira, P., Frade, P., Barros, L., & Barbosa, A. (2019). Family Caregivers’ Anticipatory Grief: A Conceptual Framework for Understanding Its Multiple Challenges. Qualitative Health Research, 104973231987333. doi: 10.1177/1049732319873330

Article written with Charmaine Leong. Charmaine is a psychology undergraduate from the National University of Singapore (NUS). Charmaine is an aspiring clinical psychologist who is passionate about raising awareness of mental health issues in Singapore. She is currently on internship with ImPossible Psychological Services under the supervision of senior clinical psychologist, Haikal.