Sharing the final journey
LITTLE Haven Palliative Care business manager Sue Manton shares her personal and moving story about what it was like for her recently, caring for her terminally ill mother:
These past 18 months have given me a heightened perspective as a carer, a consumer and advocate for palliative care.
My previously independent mum's shock diagnosis of a GBM (glioblastoma) meant she now needed 24-hour supervision.
And so the journey began, drawing on everything I'd gleaned from 15 years in community-based palliative care, supporting Mum's wish to remain at home, respecting her treatment choices, and doing all we could to maintain her quality of life.
I gathered her community around her - family, friends and support services - to fill her 24-hour care roster, communicating through Facebook group messenger Mum's A-Team.
Whilst not without its challenges, there were also great advantages - like grandkids getting to spend special time caring for her.
People and their capacity to care are amazing, from the male cousin who "never thought I'd be doing up a woman's bra” to the little boy who took her bins out ... they just need to be shown how.
That's the value of palliative care. Gently guiding and educating carers as their loved ones' care needs progress.
And I have learnt a lot about caring too. Whilst exhausting, the challenge is conveying there's no inherent loss of dignity in dependence upon another. Caring takes more than empathy, it takes a shift in thinking about the worth of a life.
The result is that Mum stayed at home, having had special time where we could all give back to her the love she has given us across the years.
Caring is a privilege but it's hard going and often a thankless task, with the emotions of the dying person taking precedence over the needs of the carer.
And then it's over and you are just left with a huge hole, which was once filled with the responsibility of caring, a lot of second guessing about whether you did all you could, and an aching heart for what once was.
Carer and bereavement support are essential elements of palliative care - in fact often the greater part of the care equation.