by Rudra Sen
LTC Intern
Mourning vs. Grieving
Grief in any form is not easy to deal with. The recent loss of a loved one, i.e. bereavement, is never easy but it is essential to distinguish between ‘mourning’ and ‘grieving’ behaviors since it affects individuals in different ways.
Mourning often relates to the conventions we associate with as an integral part of society and culture. Grief, however, has biological origins. Therefore, as with most biological processes, it has been well-studied and documented that grieving people are usually affected psychologically as well as physiologically making it a more concerning case compared to mourning. [1] Grief is not limited to experiencing just one kind of emotion like sadness, despair, or fear but rather a multitude of emotions. An individual experiencing grief from losing a colleague, for instance, would differ considerably from one losing a child.
Why does The Lost Travelers Club focus specifically on parental grief rather than other forms of grief or grief in general?
This is essentially due to the fact that parental grief has been proven to be unique, complicated, nuanced, exceedingly intense, and longer-lasting than grief stemming from other forms of loss. Parental grief has been linked to an observable increase in psychological disorders and even mortality! [9] [7]
Parental grief triggers have been equated with active military personnel PTSD, both experiencing a similar set of emotions one feels while they are waiting for a bomb to explode, or the trauma, chaos, and devastation that ensues after the explosion. A Peregrine's efforts to move forward in life seem to be in vain while a complex mesh of wires inevitably brings about the worst, like wandering through a minefield. Shock waves from these traumatic events engulf anyone they touch and have a lasting impact on every single person they come across, usually negatively. Grief is heavy as well as isolating. [10]
While there are common factors across all grief journeys, parents experiencing the loss of a child in a hospital setting have been found to experience incremental stages of grief compared to those who lost their children in their homes.[2] Another study found that fathers, particularly those who lost their children from cancer in a hospital setting, experienced extended periods of elevated levels of anxiety, stress, and depression afterward. [3]
It has been found that the level of preparedness that parents have prior to their loss heavily determines the quality in which they experience grief. [4] This is more evident from a study where parents experiencing child loss due to ‘sudden death’ had even more heightened levels of shock. Parents who are afforded time to process and bid farewell to their child, or engaged in rituals meant for perinatal loss, scored lower in terms of the grief levels they experience. Elevated rates of grief were observed for a period extending from six months to at least a year in mothers having no children prior to the one they lost, lack of socioeconomic support from their families or in-laws, or lack of religious beliefs. (Tseng et al., 2017, 5133-5142).[5] [7]
Peregrines have been studied to experience a tougher time if the child's death was complicated or attributed to violence. Suicidal tendencies, which are mostly indirect, bitterness, shock, lack of belief, and anger were observed in these parents. [6]
Therefore, to progress in the healthiest and most balanced way possible through these various kinds of grief, it is essential that Peregrines actively work on improving their own cognitive restructuring. One way to add purpose and meaning to this journey and throw a positive light on their experiences might be to engage with other Peregrines in meaningful work such as fundraising for a charity. Our awareness of parents who have successfully used avoidance-focused coping mechanisms is very limited. However, those who actively explored various coping styles have been successful in dealing better with grief or depression. [8]
Identifying some of the stages parents might have to go through during the loss of a child:
1. Anticipatory Grief: This is the form of grief that most families get engulfed in as their children get introduced to life-limiting conditions. One starts realizing that they can no longer have the childhood they have always wanted for their children. The sense of control fades away bringing a plethora of emotions guided through assumptions. Secondary factors like physical well-being, lack of support systems, economic conditions, and faith starts compounding on their emotional well-being. Another compounding factor that seriously affects individuals is Denial. Families refuse to link the physical consequences, outbursts, or complex feelings they are feeling to grief. The initial phase of anticipatory grief usually starts as soon as the medical team states that every form of medical care has been exhausted and not much can be done to help the child.
2. Death Anxiety: Watching one’s offspring going through anxiety or depressive behavior attributing to veiled information regarding their health, lack of proper involvement in decision-making in terms of their health, and wondering about the kind of pain that might be associated with the process of death can adversely affect the psychological well being of parents which could last for months or even years! A family having to bid farewell to their twelve-year-old and promising him that they would be fine without him - is one of the best examples to showcase how acceptance works in alleviating grief. However, acceptance at this stage is always tough.
3. Creative Outlets: Various creative outlets available at this stage, such as music, artistic therapies, or sports, heavily influence emotional management in both parents as well as in children dealing with extreme emotions.
4. Planning and Preparing: Guiding parents to choose the activities they wish to engage in the memorial planning of their child helps in accepting the inevitability associated with the condition. Social workers, child life specialists, and other care providers must guide the family regarding the economic aspects associated with negotiating the funeral process. Choices such as cremation, burial, or other means, must be advised on, taking into consideration the economic aspects of the family. Poor choices done without much thought might increment their grief and do them more harm than good. For patients seeking International Medical care, it is essential to choose beforehand the embassy, funeral homes, and other agencies they wish to work with, as well as the discussion about the rites they would like to have performed. This stage also includes choosing the location where they choose to have palliative care and passing.
5. Experiencing pain through spiritual suffering: Family, cultural, religious, or other unique traditions often help the child as well the parents in answering existential questions like ‘Why my child’ or ‘Why me’. Often patients have reported that practicing gratitude in this hour of crisis helps immensely in accepting the inevitable. Group therapies that engage the child along with the family through meditation, physical exercise, or art can be effective in dealing with spiritual pain.
6. Family interventions and Death Conversations: Parents could get comfort by being beside their offspring as they prepare to leave the earth. Engaging them in death-related conversations covering topics of the life cycle and how we are always a part of the earth helps immensely.
7. Death Before and After: As the signs related to the child’s death emerge, it is essential that caregivers are present to comfort their families. For many cultures and religions moments before death are sacred and therefore utmost care must be taken by the care providers to make sure that their needs are met in the best possible way. Anticipatory guidance must be provided by the caregivers to address the complex and intensified emotions of grief the family is experiencing. A week following the death it is essential to look out for emotions like disbelief, shame, guilt, helplessness, resentment, envy, weakness, weight loss or gain, changes in appetite, forgetfulness, tightness in the chest, etc. In many countries, accepting the new reality is often aided by ceremonies like memorials. Support from grieving groups, counseling, and therapy helps a lot in dealing with intense feelings of grief. [10]
Here at The Lost Travelers Club, we acknowledge the essential need for Peregrines (those of us who have outlived our beloved children) to give meaning to their lives and to live in peace with our memories.
References:
1. Averill, J. R. (1968). Grief: its nature and significance. Psychological Bulletin, 70(6p1), 721.
2. Drew, D., Goodenough, B., Maurice, L., Foreman, T., & Willis, L. (2005). Parental grieving after a child dies from cancer: is stress from stem cell transplant a factor? International Journal of Palliative Nursing, 11(6), 266-273.
3. Goodenough, B., Drew, D., Higgins, S., & Trethewie, S. (2004). Bereavement outcomes for parents who lose a child to cancer: are the place of death and sex of parent associated with differences in psychological functioning? Psycho‐Oncology, 13(11), 779-791.
4. Michon, B., Balkou, S., Hivon, R., & Cyr, C. (2003). Death of a child: parental perception of grief intensity–end of life and bereavement care. Pediatrics & child health, 8(6), 363-366.
5. Wijngaards, L. D. N. V., Stroebe, M. S., Schut, H. A. W., Stroebe, W., Van Den Bout, J., Van Der Heijden, P. G., & Dijkstra, I. C. (2008). The impact of circumstances surrounding the death of a child on parents' grief. Death Studies, 32(3), 237-252.
6. Zetumer, S., Young, I., Shear, M. K., Skritskaya, N., Lebowitz, B., Simon, N., ... & Zisook, S. (2015). The impact of losing a child on the clinical presentation of complicated grief. Journal of affective disorders, 170, 15-21.
7. Morris, S., Fletcher, K., & Goldstein, R. (2019). The grief of parents after the death of a young child. Journal of Clinical Psychology in Medical Settings, 26, 321-338.
8. Harper, M., O’Connor, R. C., & O’Carroll, R. E. (2014). Factors associated with grief and depression following the loss of a child: A multivariate analysis. Psychology, health & medicine, 19(3), 247-252.
9. Goldstein, R. D. (2018). Parental grief.
10. Schuelke, T., Crawford, C., Kentor, R., Eppelheimer, H., Chipriano, C., Springmeyer, K., ... & Hill, M. (2021). Current grief support in pediatric palliative care. Children, 8(4), 278.
