Bereavement: A Parent’s Perspective
This piece first appeared in the Pediatric Advisory Council’s Pediatric E-Journal from the National Hospice and Palliative Care Organization. Read more on Instagram at @nhpco.
With Prolonged Grief Disorder, being added to the DSM-V for the first time, replacing Persistent Complex Bereavement Disorder, bereavement has now officially become pathologized. Prolonged Grief Disorder does not take into account extenuating factors such as previous traumatic experiences, depression, or anxiety. It is merely categorized and diagnosed by the persistent yearning for the person who has died and by exhibiting at least three of the eight symptoms listed here, one year after a loved one’s death.
These include:
Feeling as though part of you has died
A sense of disbelief about the death
Avoidance of reminders that the person is dead
Strong emotional pain related to the death (anger, bitterness, or sorrow)
Difficulty moving on with your life (socializing with friends, pursuing interests, planning for the future)
Emotional numbness
Feeling that life is meaningless
Extreme loneliness (feeling alone or separate from others)
But what most parents who have lost a child already know is that many if not most of these so-called symptoms are normal and exhibited broadly across groups of bereaved parents specifically, and that for many, their grief is too nuanced to fit such a diagnosis. Many parents would note that there is no timeline to their moving through or beyond their grief. It’s an ongoing ebb and flow. When someone we love dies, we will likely miss them for the rest of our lives. It’s natural and part of the human experience. It poses the question, that what if grief cannot be overcome? And furthermore, should it be? When it is your child that dies, it’s incredibly difficult to reconcile due to the fact that it often it feels unnatural and untimely. It’s no surprise that many of us feel we have lost a part of ourselves; in a very real way, we have.
Additionally, for those caring for a medically fragile or terminally ill child, your daily routine and all aspects of care are wrapped up in your life with your child. It’s not surprising that when a child dies, these parents may also feel a loss of their sense of purpose, or even their sense of self. Many parents may contend with feelings of helplessness simply because they were unable to save their child. As a parent this can lead to feelings of both guilt and shame in their perceived failure to adequately care for their child, or even sustain their life. Kindness and self-compassion play an important role in a parent’s ability to move forward. At this stage accomplishing even the smallest tasks can seem overwhelming when you’re already emotionally depleted. I don’t know a single parent of loss who didn’t find themselves to be emotionally numb at some point in their grief.
While the symptoms of grief may become harmful, such as the inability to interact with the world around you, drinking too heavily, not being able to care for yourself, or becoming completely incapacitated, and medical or mental health treatment should be sought, it’s important to recognize the varying levels at which these and/or other symptoms will present for all who are grieving. Coding this natural reaction in such a generalized fashion as a sickness in order receive a diagnose to obtain treatment is risky considering the ramifications it presents down the line when those individuals look to work through their potential trauma, anxiety, and depression that is event related, and not otherwise broadly applicable. Additionally, it’s further stigmatizing for bereaved parents who are so stigmatized in society as is.
Bereaved parents want so desperately to find a way to continue to walk in what feels for them, a world broken into two parts: the before and after. Parents desire to be able to share and talk about their child with others, much the way those who have living children continue to do. For the bereaved their children are still very present in their thoughts. At the heart of it all, bereaved parents may feel fearful that as the world around them moves forward, it will forget about their child completely. One should not shy away from mentioning their child’s name to a grieving parent. It is music to their ears. Additionally, they may struggle to move forward themselves due to the emotionally pull of feeling that it may mean they are leaving their child behind. While this is, of course, not the case, it does take time for the bereaved to rectify their presence in this new world without their loved one and adjust to living in it, still.
Support is a key factor in a grieving parent’s ability to move forward. Many will express the thankfulness for the initial support they received, but may feel feelings of rejection, anger, or betrayal when those initial supports fall away. Most parents report not feeling supported after the initial wave of phone calls, cards, flowers, and casseroles ceases. Most wish the outside world didn’t expect them to suddenly be ok after a prescribed yet arbitrary time, such as six or twelve months. They wish their friends and family would still check in on them and recognize this will always be a paramount event in their lives.
The experience of community has been a sustaining factor for me throughout my daughter’s diagnosis, illness, and past her death. Having a connecting, supportive group of other parents who understood firsthand was a safe space for my grief. It’s been ten years since my daughter’s death, and it’s still in this small, tight-knit group I find my solace. It’s with them I can relax, let my walls down, and share my vulnerability most fully. The parents I know who have lost their child report sharing this feeling as well.
The process of mourning is not one that can be and should not be rushed. It cannot be bypassed for the sake of society’s comfort. It should not be suppressed or ignored. We should be actively working to create a community inclusive of grieving parents in order to support them through their grief no matter how long it lasts because after all, grief is the cost of a great love lost.
