“It’s okay to depend on other people” – bereaved father Rudi shares his family’s experience with palliative care

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“It’s okay to depend on other people” – bereaved father Rudi shares his family’s experience with palliative care

Rudi’s son Silas was just one year old when he received a brain tumour diagnosis.

Rudi Greef’s experience of palliative care – as a parent – brought some unexpected light into a highly challenging time. He shares how in-home palliative care helped his son and family, and why he’s so determined to help other families.

Rudi’s son was just one year old when he received the brain tumour diagnosis that would throw them into an experience that no family anticipates.

“When we first got the diagnosis they put us in touch with the palliative care team. We had a thousand questions and no answers, but the palliative care team made it an open for discussion space,” Rudi says.

Finding unexpected light in a highly challenging time

Adding to the challenge of that time was the pandemic, giving Rudi and his family limited access to the support of their family and friends. While some family members lived nearby and were able to obtain special permission to come into their home at times, others lived overseas so weren’t able to be part of the experience in the way they would have preferred.

This made the role of the palliative care team even more vital for Rudi and his family; especially their son, Silas.

“The palliative care team didn’t come in kicking down the door; it was a space for us to open up at our own pace and to have discussions about what it meant for us as a family and for Silas. And they were so warm towards him,” says Rudi.

“We wanted to know how we could help him, so it was great to have that open space for discussion where we could take everything in, process it in our own time and come back with any questions. That allowed us to verbalise some of our complex emotions.”

Rudi particularly remembers being so focused on helping Silas that usual priorities like housework no longer mattered. The family felt no judgement from the palliative care team when coming into their home, but rather they felt love and acceptance.

“As a parent, your focus is to protect your child. And the people coming into our home, their primary focus was care for Silas and for us as a family, and that helped me to accept their support. As a result, I could pour all my resources into what I needed to do,” says Rudi.

Why Rudi and his family are determined to share their story with other families

When Palliative Care Australia were developing a series of resources to support End-of-Life Location conversations and decisions, Rudi was keen to help out.

The End-of-Life Location videos, written stories, and fact sheets are a comprehensive guide designed to assist parents, families, caregivers, and healthcare professionals in making informed and compassionate decisions about end-of-life locations.

“My hope in being involved is for other parents to know it’s okay not to have the answers,” Rudi says.

“Even though your very essence as a parent is telling you that you’re supposed to know what to do, it’s okay not to have the answers at that point in time, and it’s okay to be wrong. It’s okay to look to other people and depend on other people. And hopefully the answers will come in time.”

The other message he’s keen for other families to hear is that there are parts of this experience that are more positive than most people would think.

“We share our story so that other people know there’s light at the end of the tunnel,” says Rudi.

“There are moments when you can have joy in this as well. And your life will change forever, but you learn to grow and to live with it.”

The paediatric palliative care 'End-of-Life Location' videos, written stories, and fact sheets can be viewed and downloaded HERE.

Explore the Paediatric Palliative Care website for more advice, tools, and support HERE.