9 Mar 2018 | Partners in Care
Ngāti Kahu Ki Whaingaroa, Te Aitanga-a-Māhaki
Te Rina Ruru’s life changed the morning her brother Ray had a car accident which left him with a traumatic brain injury. She was 16 at the time and struggled to cope. Te Rina shared her story at the Health Quality & Safety Commission’s Let’s talk forum on 8–9 March in Wellington.
'I remember walking into the hospital, the corridors were dark and there was a sense of foreboding in the air. Our beautiful brother lay peacefully in a silent room. We didn’t understand what the doctor was talking about. To us he looked perfect. Despite what he looked like on the outside, the real injury was inside,' recalls Te Rina.
'They called it a traumatic brain injury, but no one sat us down and explained what that meant.'
The family had no idea what to expect in the coming months; Ray spent three months in hospital and five months in rehabilitation.
At the rehabilitation unit, the whānau didn’t want to leave Ray alone, as he had been hit by other patients in the night and left too long without basic cares. So they juggled their lives, from work and studying to child care and being with Ray at the centre. However, there were real concerns about their own safety from other patients who would be physically and sexually abusive towards them when they visited. The whānau were left to manage alone so they made the difficult decision to take Ray home.
Home brought new and unforeseen challenges. Ray is a 6’3” 120 kg wheel-chair bound, non-verbal man. He slept in the lounge and her mother in a Lay-Z-Boy beside him, with her sister and two children in one room and Te Rina in the other. They shared Ray’s 24/7 care, with various home-based support workers coming into help.
Te Rina says her mother was under immense pressure; while worrying about her son, she was also trying to keep the family afloat, trying to maintain the mortgage payments, feed the whānau, support them and navigate the health system.
They were labelled ‘a difficult family’ because they demanded a high standard of care for Ray.
'Was it too much to ask,' says Te Rina 'to ask for care workers to be trained in washing and caring for my brother and for counselling support for the children and my mother?'
The family’s focus shifted to Ray’s needs and as a result everyone’s lives were impacted. They all tried to carry on, but were struggling under the pressure.
After the accident everything changed. Her brother was her biggest support and suddenly she had to be his – it was like the floor had been pulled out from beneath her.
Te Rina struggled under the pressure and turned to self-harm as a way to cope.
'One night it got really bad – I was home alone and all I could do was think, my brother was different, my mother was different, I felt so alone. I walked into the kitchen, opened the draw and grabbed the biggest butcher knife I could. I was drenched in blood on the kitchen floor. I knew I couldn’t do anything else… I knew I couldn’t do that to my family, they had been through enough.'
Instead, her response has been to learn as much as she can about the health system, even going to university to study.
She has also become an advocate for whānau going through the impact of living with a family member’s trauma. Her family established the Brain Injury Support Network to support family/whānau going through similar trauma, and started a new initiative, Camp Unity for children and young people working through trauma and low self-esteem to build healing communities.
Te Rina’s dedication to her brother and whānau shows through the ongoing care of her brother at home. Her plea is for more support for family/whānau as they are adjusting to their loved one being a changed person with new and challenging demands, which are not just emotional, but can significantly change the dynamic of the family through the ongoing dedication of time, resources, 24/7 availability and care.
As a family they didn’t get counselling or advice on how to help each other or the larger whānau network.
'Ray’s daughter would visit every fortnight and one day my mum and I were sitting talking to her about how we could all go camping,' says Te Rina.
'I looked down and saw scars on her arms and legs.'
Te Rina had many thoughts racing through her head: ’has my beautiful niece been going through this alone?’ ‘Is this my fault?’ 'I felt like our world was shattered again.'
It took Te Rina a while to realise she wasn’t that 16-year-old any more. Over the last ten years she has met many children who were self-harming. There were so many other families and so many other children who were or still are battling with the same challenges.
This led her to establish Camp Unity, alongside friend and counsellor Char Rain, to support children and young people experiencing self-harm and trauma.
Te Rina talks about ‘the ripple effect’.
People don’t really talk about the ripple effect, the effect of trauma across the whole whānau, like the ripples in a pond. This was the inspiration to create Camp Unity which brings vulnerable children together in a safe and secure environment where they are free to be themselves.
They have made it their mission to empower every child to have a voice. Camp Unity develops strength and unity and forms healthy relationships, teaching children to understand their individuality and develop their self-worth.
'They arrived broken, they were totally different, and now they can’t wait for the next camp.'
Te Rina challenged delegates at the forum to think about the consumers and family/whānau going through their services right now. She asked 'What can you do to alleviate some of the burdens of the health system right now so that, instead of fighting the health system they can heal with each other?'
She ended to a standing ovation.