Palliative care - love, loss and letting go
Betsy Kuo never expected the end of her husband's life to feel so peaceful.
Peter was diagnosed with young onset Alzheimer's disease at 63 and, for three and a half years, Betsy was by his side as his carer, his advocate and his wife.
In the Planning Ahead episode of the Hold the Moment podcast, Betsy talks about how even when Peter didn't have the words for what he wanted, she came to know his wishes without needing to be told.
He wanted to stay at home for as long as he safely could.
He wanted one last family holiday with their two daughters.
And he didn't want his life prolonged once he felt it was time to go.
A week before he died, the family took that holiday to Mooloolaba.
On their last day they walked into a calm, shallow pool between the waves and, for a moment, Peter let go of his fear of the water.
He floated, free and at ease, just as he always had done before.
“Palliative care was like moving into a safe space”
When Peter moved into palliative care soon afterwards, something else shifted too.
“When we moved to palliative care, it was like moving into a safe space,” Betsy says.
“The noise went away, the fear went away. There was grief but there was lots of love.
“There was room to breathe.”
The family spent Peter’s final full day together, just the five of them, no visitors.
The next morning, Betsy sat with Peter alone for hours.
Their daughters arrived at lunchtime with flowers. And not long after, in the quiet, Peter's breathing changed and he was gone.
Having the difficult conversation
For people living with dementia and the people who love them, palliative care can feel like a conversation for later.
But as Jayne, Dementia Australia's Nightingale Program Manager shares, the earlier that conversation starts, the more choice and control families can hold onto.
“Palliative care goes from the point of diagnosis,” she says. “It’s not about morphine at end of life. It’s about living well, having good quality of life, having choice.”
You can hear more from Jayne and Betsy in the Planning Ahead episode of Hold the Moment, Dementia Australia's podcast.
The podcast is available on podcast apps, the Dementia Australia website and Dementia Australia's YouTube channel.
About the podcast
Dementia Australia's Hold the Moment podcast is full of stories about life after a dementia diagnosis.
It is co-hosted by Jim Rogers, who lives with young onset dementia, and Dementia Australia Ambassador and journalist Hamish Macdonald, whose father lived with Lewy body dementia and Parkinson's.
Looking for support?
The Hold the Moment podcast is just one of the ways Dementia Australia supports people impacted by dementia.
You can also contact the National Dementia Helpline on 1800 100 500 (available 24 hours a day, seven days a week).
For more information on this topic including choosing, visit the Palliative Care page on our website.
