Matt was only fourteen when he was diagnosed with a rare muscular dystrophy, a disease which causes you to lose over time all muscle function. He died at the age of eighteen.
His parents provided total care for the last eight months of Matt’s life. They set up Matt’s bed in the living room so that the life of the family centred around him. His younger brother and sister helped with the care, feeding him and keeping him; all had their jobs to support their brother.
The family found out about the Dying at Home Program from the area health service and called for assistance since Matt and all the family wanted to stay together at home right to the very end. It was such a scene of life and living in that home. A keen football supporter, Matt’s dream came true shortly before he died. The captain of the team arranged for an ambulance to take Matt all the way to the stadium: his favourite football team was about to play the grand final. They called on Matt to be their mascot!
Despite so many good things happening in that home, Matt’s breathing was now his biggest problem and becoming more and more difficult. His Dad asked if it really was possible to care at home right to the end because he was worried that Matt could actually choke to death. It was vital to talk about this and I was able to give reassurance, with very sound medical evidence, that people with diseases like muscular dystrophy do not choke to death. They actually go to sleep one night, calmly dying in their sleep. With palliative care providing small doses of medication for the breathlessness when awake to treat the anxiety that breathlessness causes, this distressing symptom can be settled. It was vital to share this knowledge with Matt, his Mum and Dad.
Then Matt asked me, “will I have trouble breathing in heaven?”
As Matt became weaker and sicker his Dad stayed alongside him through many long nights to be there to comfort his son so he would not be afraid. Then one night it happened. Matt went to sleep very peacefully and just didn’t wake up.
Losing a child cared for so completely for such a long time results in protracted grieving, It required a long time and much support for the family and counselling for the extended family, especially the elders. The family gained strength from knowing they had done everything possible for Matt, even to trusting that he would go gently in the night. It was this great work of love that sustained them in their grieving journey.