Research has shown that when a child dies, the place of their death may have lasting consequences for the parents during the bereavement process. In this blog, Bonni Suckling, mother to Jed and founding member of Rainbows and Smiles, describes why home was the best place for her 6-year-old son to die.
I feared Jed dying his entire life (even before cancer). From the moment I held him I knew that I would do anything for my son. My heart literally no longer belonged to me. It was like my soul joined his and we were one person. Aristotle wrote, “Love is composed of a single soul inhabiting two bodies.” While I may never have felt the physical pain he endured, the emotional burden was heavier than anything any human should endure.
In palliative care we have the unique privilege to plan for death. We get to explore what parents want regarding the place their child dies and guide them through the decision-making process. Paediatric Palliative Care (PPC) teams can present options and even help equip parents to deliver care at home, should the family decide that home is the right place for them.
A good place to die will mean something different for everyone.
As grieving mothers, we often huddle around and chinwag about the final day of our child’s life. We discuss our regrets and what we felt we did right. These conversations almost always require tissues. We can recall the minute-by-minute details of our child’s death day. Over a decade later, I can recall every tiny detail and memory from the day my son died and yet I have no idea what I had for breakfast this morning.
Why do we remember traumatic events so vividly?
“The stress hormones, cortisol, norepinephrine, that are released during a terrifying trauma tend to render the experience vivid and memorable, especially the central aspect, the most meaningful aspects of the experience for the victim,” says Richard McNally, a psychologist at Harvard University.
How important is a good paediatric death if the parent (sibling, family, close friends) can recall every detail?
The best place for my son Jed to die was at home with his dad, mom, grannies, and his stinky dog. In his bedroom with his favourite music playing and his toys all around him. Buzz Lightyear watching over us on the cupboard and Ben 10 looking down on us from the wall poster.
The questions we asked ourselves were simple.
Was Jed comfortable √
Was Jed surrounded by love √
Was Jed pain-free √
While we could achieve these 3 things we would stay at home. We were emotionally equipped to help him transition, we had morphine and we had his doctor a phone call away.
Jed died at home. As his mother, I did not want to move from the place on the bed where his little curly head last was. His daddy wanted to relocate and started house hunting. The grannies kept cleaning, the day after Jed died, the grannies were using the hoover. I warned them both that if they moved anything Jed had touched that I would kick them out. They respectfully hoovered around his toys. Jed’s stinky dog ran up and down the house as if looking for Jed and then, to add to our worries, stinky dog stopped eating for a few days.
There are things that happened before and during Jed’s death that have given his dad and I the worst case of PTSD, but I would not change a thing about the location of his death. If there is an amendment being handed out, he doesn’t die at all because as I use my own experience as reference – NO DEATH IS A GOOD DEATH.
I am a rather tenacious little human and even in his death I was striving to be the very best mom. I couldn’t fix him and so I wanted the perfect death for him. We had candles and soft music, stinky dog, Ray and I. The grannies were not allowed in the room, they would pop in to offer tea and clean, but they were banned from entering this private space. I think old people clean for comfort. Hoovering, washing machine and dusting sounds replaced hospital machinery.
The solace of knowing Ray was holding my hand and he was the strength and glue holding the emotional catastrophe together, gave me the ability to have moments of violent sobs. Ray would look at me and gently say; “we have got this – please remember Jed still needs us.” Of course, the household sounds of cleaning meant that the grans were there too. Bless their cotton socks.
I remember I had my head on Jed’s chest and his heart was beating so loud and super-fast and then it suddenly stopped!!!!!!! I started hysterically screaming… NO..NO…NO and… Ray repeating over and over, what an amazing mother I was, how hard I had tried, how I had done everything… over and over he kept reassuring me that Jed’s death was NOT my fault.
I wasn’t prepared for his death at that moment. I thought his heart would slow down and then pause and then stop, so while he had such a FAST and LOUD heartbeat, I thought we had time. The sudden slap of silence was so violent and traumatic because it wasn’t expected at “that” moment.
I was waiting for the “Grey’s Anatomy” moment when the family hold hands sweetly, the patient’s heart slows down and everyone does a graceful sniff and wipes the solo tear.” I was striving for that beautiful moment. Which clearly never happened. I was a screaming, sobbing, hysterical, shrapnel flying everywhere uncontrollable wreck. Which is exactly what I did not want! Pfffffft!
But even after all the drama, the simple answer still is… yes, I am glad he died at home, but I could not have done it without Ray and the cleaning grans. Even stinky dog had a role to play, as he kept trying to “lick” Jed awake which was an annoying but welcomed distraction. I was not emotionally equipped, and I think that if we learn anything, it is the massive need to ascertain what home based support the family has in place.
The nicest thing (what a hideous start to this sentence) about Jed dying at home, was the 8 hours after his death, that we got to lay with him, hold him and wash him and say goodbye and let him go at our pace.
The funeral home was also just incredible. They arrived and gave us space, there was no rush. They asked for his favourite blanket, a teddy for him to hold and they tucked him into the hearse with such dignity. There were NO human body bags, and they did not cover his face.
When Jed was alive, he loved playing with my hair, so I cut off my ponytail and placed it in his hand. The funeral-home-smartly-suited-up-man stood waiting patiently as I hacked off my hair and just smiled lovingly at me. He was in his “wedding” suit at 5 am. I liked that he dressed up for the occasion.
About the author
This blog was written by Bonita (Bonni) Suckling, mom to Jed, who died from a brain cancer called Anaplastic Astrocytoma. Bonni is presently studying for her Post Graduate Diploma in Paediatric Palliative Medicine at the University of Cape Town. In Jed’s memory Bonni founded Rainbows and Smiles in 2009, a community-based, charitable foundation dedicated to providing emotional, social and financial support to children diagnosed with cancer or a life-threatening illness, and their families and caregivers.
Find out more at: Rainbows & Smiles – Supporting Kids with Cancer (rainbowsandsmiles-sa.org.za)