The grief experienced when someone or something important remains physically present, but has fundamentally changed or is no longer emotionally or relationally accessible. It’s a form of ambiguous grief that doesn’t involve death, yet still carries deep emotional pain.

Unlike bereavement, which follows a clear event like death, living loss arises from ongoing or unresolved life changes that disrupt relationships, identity, or life expectations. These losses are often overlooked or minimised, making them harder to process and validate.

I was reading an article about Bruce Willis and his diagnosis of frontotemporal dementia and the affect it has had on his younger daughters. In an article with Vogue Australia, their mother, Emma Heming Willis, was asked how her daughters were coping with their father’s condition. She said, “They grieve, they miss their dad so much. He’s missing important milestones, that’s tough for them – but kids are resilient, (although) I used to hate hearing that because people didn’t understand what we were walking through”.

Emma continues, mentioning her step-daughter Scout who she quotes as saying, “Grief is the price we pay for loving someone so deeply”. She goes on to say, “for me, the grief I feel over what’s happening is rooted in the deep love I have for Bruce and my family. There is so much beauty in that. And here’s the truth: no one in this world will escape grief – it’s a universal part of loving and living.”

I feel this keenly, as my twin’s father suffered a brain aneurysm in 2021, during Covid. He subsequently spent 6 weeks in ICU, 3 of them on life support and we weren’t sure if he would survive. The kids were only 8 year’s old at the time, and that’s effectively when they lost their dad. While he did survive, he has spent years in neurological care facilities and is now living in supported housing.

He has come a long way and has few physical disabilities as a result, the main one being partial blindness in his right eye. Incredible, considering we initially weren’t sure he would be able to walk again. But he has very little working memory and he can’t remember much of his previous life, unless prompted and reminded. He is able to care for himself with support from his care worker, but he isn’t a father figure. He is childlike in his outlook and mannerisms and while he expresses his love for his kids, he is not a parent. For me, it’s like having another child, that makes rather inappropriate jokes!

Of course we are happy he is still here with us and, as he puts it, has a second chance at life. But my children don’t have a father who can support and guide them. Who can provide for them. As teenagers, they typically get annoyed at him for his silly jokes and they are embarrassed by him if we take him out. His brain injury also means that he cannot understand that his daughter is autistic and he is intolerant of her behaviour, not matter how much I try to explain her sensory issues. This causes conflict and frustration when he visits and is something I hope he will learn to understand over time.

The grief, for me, is for my children. That they don’t have the father I wish they could have – who is involved and able, and present. This is the father they have known for almost 5 years now, so perhaps they have adjusted. But in many ways, it’s still a loss. And for many whose parents are older and who have developed dementia… Their loved ones may still be physically present, but the person they knew and loved has either changed and/or forgotten who they are. It’s those left behind who have to deal with the everyday consequences of both love and tragedy. One day I’ll have a deeper conversation with the twins around the living loss of their dad and how it’s affected them individually. Until then, we are just grateful he is still physically present.