A Different Way of Exploring Grief

This week, I had the pleasure of spending a day at Child Bereavement UK’s South Office with their regional lead Rachel. While themes of bereavement and grief will be impossible not to confront this year, I was nervous about devoting the day to programming that focused mainly on what happens after death. But as I am sure I will find time and time again over this year, my visit to CBUK not only opened my eyes to the integral role that bereavement support could and arguably should play in end-of-life care but also pressed on the edges of my project, allowing me to consider a wider scope and open up more areas for future exploration. 

Child Bereavement UK South Office.

What is Child Bereavement UK and Supportive Care?

I arrived at the industrial front of Child Bereavement UK in the town of High Wycombe, a train ride outside of London. As I sat in the colorful and lively waiting room, I was greeted by a mother and her children who were playing with a piano and puzzling, waiting to be seen for their support session. Rachel later came to collect me, introducing me to the rest of the staff, and bringing me to one of a handful of family rooms. The one we sat in specifically was the adult room – where Rachel might see recently bereaved couples who lost a child, bereaved parents navigating how to aid their children in understanding the death of a grandparent, or a widow/er learning to both grieve their partner and raise their children as a single parent. I immediately picked up on how comfortable the room felt, how home-like, and notably, not depressing. There were very few references to grief in the décor but rather books speaking about laughing, parenting, love, and life-affirming activities. Once we had settled in, Rachel got to explaining the setup of their national charity. Child Bereavement UK (CBUK) was founded about 30 years ago on the tenets of what Rachel called supportive care. In the United States, the typical “treatment” for bereavement and grief comes from grief therapy where a therapist allows space for a client to look within themselves and work to climb their way out or through grief. While this is not inherently “bad,” it requires that the onus of grief work falls on the clients themselves, often leading to burnout, frustration, and consequently, increased grief. As Rachel said, therapy requires us to sit with our feelings and that might not be the most helpful way to tackle grief given the complexity and longevity of the grief experience. Differently, supportive care provides the client with a wide variety of resources – activities that help to capture their grief, research-based models that help us to understand our grief, and scripts with language that helps us explain our grief to others. Additionally, supportive care happens longitudinally as opposed to therapy; instead of meeting every week where grief may feel stagnant, supportive care works over months and years to allow for support during every stage of a client’s grief. At CBUK specifically, the tenants of supportive care are applied to children and parents, whether that be working with bereaved children directly or working with parents to help their children understand grief, death, and dying. While I could summarize all of the amazing work CBUK does, I wanted to use this post instead to highlight themes from my day at CBUK that struck me and that I hope allow us all to consider grief and bereavement work differently.

The Role of Choice 

One of the ideas that Rachel consistently returned to throughout our time together was the role of choice in bereavement care with children. She was careful to explain that supportive care at CBUK is only given to children who are interested in it, again drawing a dissimilarity with therapy. If a parent brings a child to CBUK who does not have an interest in doing bereavement and grief work, CBUK is careful to respect these wishes.

CBUK also works with parents to ensure that children have choices in the pre-bereavement stage (the time before a loved one has died). Many adults that CBUK sees are either single parents who are struggling with how to include their children in the process of their partner dying or parents struggling with how to include their children in the process of a family member (grandparent, sibling, caretaker, etc) dying. CBUK helps guide these clients toward the creation of a script or framework that these parents can use to explain that someone is dying to their children. To me, this works on two levels; the first is that children who are communicated to clearly, without euphemisms, can make informed decisions about their participation in the dying process and what they are comfortable with. They can have the chance for final moments, goodbyes, standing with their family in their grief, and after-death decisions such as viewing their loved one or participating in bereavement work. Secondly, and just as important, it takes the pressure off already hurting parents to have to figure out how to properly inform their children. Here is where supportive care works best: directly giving families what they need as opposed to hoping they come to it, which allows children and parents to function more as an inclusive unit when it comes to dealing with death and dying. As I wrote in my first blog post, language, and narrative are at the heart of my exploration this year. CBUK’s work demonstrates how setting out language, that both parent and child can understand, can operate to demystify and relieve some of the complexity of the dying process on both ends.

Touchpoints

Outside of working directly with grieving clients, CBUK also trains with professionals such as teachers, doctors, nurses, social workers, childcare workers, and more. CBUK has identified these professionals as those who may have specific touchpoints with children and families who are grieving. The training CBUK then provides teaches others how to recognize when a child is grieving or will be bereaved in the future and then how to use the resources that CBUK has to help the child. In other words, CBUK trains others to make themselves obsolete. In Rachel’s words, if a child or family is coming to them, it’s because there is something missing in their support network.

During the meeting, I probed Rachel about how this worked, and she seemed a bit shocked at my specific interest in this area. It was amazing to me to hear about something so obvious – incorporating training where children are throughout their day – and yet something so overlooked back home. While America generally is farther behind the UK in terms of bereavement-specific resources in and out of the hospital, I had never conceptualized the role of something like school in this process. However, reflecting on my experiences with bereavement as a child, I couldn’t help but wonder how much easier the transition back into my own life and normalcy might have been if it was more commonplace for my teachers or doctors to be further trained to work with grieving children. Or at the very least have been given enough training on language to use when a death has occurred. This is certainly something I will continue ruminating on and bring back with me at the end of this year.  

Memory Preservation in the Pre- and Post-Bereavement Phase

Lastly, a pervasive theme of my day at CBUK was memory and what role it has in death and dying. Rachel very quickly introduced me to the concept of memory preservation in bereavement care as it is at the heart of many of the activities that CBUK runs with children. Memory preservation involves children accessing moments with a loved one who is dying and preserving them through a medium that speaks to them. For example, I had the opportunity to view a “memory jar” made by a young boy who layered different colored sand, each color relating to memories he had with his fatally ill parent. Speaking about these memories as they are poured in allows children to identify important moments, and designating the colors signals preservation, connecting each memory to emotion and that emotion to color.

A beautiful example memory jar.

While the making of a memory jar can occur either before or after the death of a loved one, there were also memory preservation activities that encouraged making moments while someone is still alive. Rachel showed me a book that could be filled in by children that worked almost like a prompted interview. Children used the book to guide them in asking their loved ones questions, some of which the children might not even know they wanted the answers to. Aided by both the book and a CBUK facilitator, the child can ask about a parent’s childhood or college years, their favorite color or songs, or the story of how their parents met. All this information gets saved in this book, not only allowing for the keeping of this special moment between parent and child but to use as a reference of sorts as children grow and naturally wonder about these questions when the parent is no longer there.

These acts of memory preservation spoke to me on many levels. For starters, memories are very much at the whim of our emotions. Having particularly negative emotions in relation to an event can cause false memories to form or even, in cases of extreme emotion, cause us to forget things altogether. As Rachel and I talked about our own personal bereavement experiences, it became clear that this is quite natural; children who experience death without the means to process it fully or understand their grief might have trouble remembering the time before their loved one’s death as anything but negative or they simply may not remember it. Therefore, memory preservation during pre- and post-bereavement phases can intercept and force us to encapsulate these emotions into concrete items, something we can reference over and over to remember more than just death or illness.

Additionally, and most profoundly, Rachel giving me the language of memory preservation has made me consider the role of memory in dying well generally. From the perspective of the person dying, doing these memory preservations could be a way to work through the emotions they have about leaving family behind and perhaps allow them to let go of some of the heavier motifs of grief and loss that they feel themselves. I pause here to think specifically about my roommate Sage who spent time doing research concerning dementia patients and grief; she often shared the complex issues of dementia patients grieving the loss of their memories, and through this their personhood, before it even begins. For this specific patient population, I can’t help but wonder how profound the role of memory preservation could be as it would allow them to immortalize their life stories in a physical form. While there might come a point where they don’t recognize this “story” as themselves, I could imagine that preserving their memories in something tangible would lessen the fear of drifting into nonexistence.

And isn’t that common in a fear of death generally, a fear of not being remembered? So while memory preservation with CBUK operates as a tool for those who survive their loved ones, I can’t help but also use this newfound language to further probe an avenue towards dying well. Once again, though I know it is the persistent English major in me, I am amazed at the ways that storytelling and “storykeeping” have a role in end-of-life moments, and more so how it almost seems that memory preservation and storytelling become synonymous during this time. I am thankful to CBUK and Rachel for teaching me this new way of looking at grief – through memory instead of through sadness – because I am now keeping my eyes open for the ways that this motif of memory may continually crop up over this year. More soon…