When family is everything: the end-of-life journey

National Palliative Care Week is celebrated from 22 to 28 May and is aimed at raising awareness and increasing understanding of the many benefits of palliative care.

Lydia Sorensen lost her beloved mum, Carol, in March this year. In the two months before she passed, Carol lived at O’Neill House, the respite and specialist end-of-life care home run by VMCH in Prahran. ‘The words “palliative care” initially sounded frightening to me, but all I can say is, it’s made my experience of the transition from illness to death a less scary one,’ Lydia says.

Lydia cared for her mum at home before she became increasingly ill. When a social worker suggested O’Neill House, the pair knew it was the right time.

‘Once I could see Mum was comfortable and content, I let go of my guilt of not doing the main caring, and over the weeks I had a sense of relief that the care for Mum was being managed,’ Lydia says.

And so the family set about creating final memories and spending quality time together. Carol’s laid-back nature and ability to find humour in any situation endeared her to the team at O’Neill House.

‘Staff were warm, caring and genuine,’ Lydia says.

On my birthday they even decorated Mum’s room for me because she wasn’t able to do it. It was such a beautiful thing to do; to take time out of their day to help Mum and I celebrate at such a difficult time. We both felt like staff were extended family.

The feeling was mutual.

‘When journeying towards the end of life, it’s very important for families to be with their loved ones, so we support them in any way we can,’ O’Neill House Manager Amy Jumalon says. ‘Not just with the day-to-day physical needs, but emotionally and spiritually too. Here at O’Neill House, we feel like we’re a family ... looking after each other, and looking after our residents and families too.’

Despite her initial fear, Lydia says the palliative care experience was incredible.

It’s allowed me to have real conversations with Mum and really experience the transition of life. Mum’s wisdom showed me that death is not to be feared, that you can still positively impact people at the end.

Lydia urges others to consider having a palliative-care plan. ‘I believe wholeheartedly this process can make the moments easier to deal with, because you know your loved one’s wishes and have no regrets of what potentially they may have wanted. It also gave us time and space to put things in place.’

Above all, it was important to Lydia that her mum die with dignity and respect, just as she had treated people throughout her life.

On my mum’s passing, staff came to see me while I said goodbye and provided their condolences. They also respected my mum by following the undertakers who were taking Mum away by lining up as a procession, while singing ‘Amazing Grace’ and supporting me. This was a beautiful moment that I’m grateful for and will never forget.

Archbishop Peter A Comensoli visited O’Neill House on Thursday 19 May to meet residents and bless the new facility, which officially opened in July 2021. Archbishop Comensoli remarked that the home was already blessed with the presence of those who’ve chosen to call it home, as they journey towards the end of their lives.