My story, along with every other carer that receives support and guidance from Banksia Palliative Care Service, is a deeply personal one.
I lost my mother last year to Acute Myeloid Leukemia. For those that are unfamiliar with this particular cancer, there are eight strains to this disease. My mother had the most aggressive strain. Her diagnosis came in late March, she received four weeks of intense, daily chemotherapy treatment, which had no effect on slowing down the aggressiveness of the disease, and then came back to her home that she shared with my father, her husband of 51 years, to go into palliative care where my sister and I became her primary carers.
She died three weeks later.
It is hard to describe the anguish and intensity of those weeks, where in amongst my fear, heartache and grief, I was making crucial decisions and physically caring for my mother whilst still balancing the demands of work and my own family.
After the failed chemotherapy treatment, the hospital sent us home on a Friday afternoon with a pamphlet for Banksia Palliative Care Services, telling us that Banksia would call us sometime the following week, and we were essentially left on our own.
I called Banksia on Saturday. They arrived first thing Monday morning, and became our touchpoint from that day forward, coming to my parent’s house every day for the next three weeks.
Under the compassionate guidance of the wonderful, caring and knowledgeable palliative care nurses that visited us daily, I learnt how to manage mum’s care – how to identify and treat symptoms, how to keep her comfortable, what signs to be aware of, when and how to administer pain relief, how to arrange the hiring of equipment and other medical aids, how to feed her and manage her oral care. In essence, how to make the dozens of necessary daily adjustments to her care as she rapidly declined.
I cried a lot during this time, and the nurses held my hand and gently gave me the courage and strength to keep going. Matthew, Fiona and Michael became my lifeline as I struggled and fumbled my way through the grief and trauma of caring for my terminally ill mum as she rapidly, but slowly, died. I recall crying on Michael’s shoulder and saying “I’m trying”. He would gently respond, “No, you’re doing”.
Months later, when I reflected back on this period of time, I was able to recognise just how crucial the aid of the Banksia service was for our family. My mother didn’t want to spend her final weeks in a hospital bed, and we didn’t want that for her either. She wanted the comfort of her own home, the warmth and familiarity of the place where she felt loved, a place where she belonged. A place where we all belonged together as a family who had shared a lifetime there of memories, occasions, joy and tears.
Without Banksia’s support, we could never have given mum her final wish. We could never have surrounded her with as much comfort, care and dignity that we did as she lived out her final weeks surrounded by the love of her husband, her children and her grandchildren, in her own home.
What I realise now, is what the Banksia staff knew all along – that death is not just about the dying. Whilst the care of the palliative patient is, and rightly should be, at the forefront of the service, it is the subtlety of caring for the carers where Banksia also excels.
As a society, we generally don’t talk about death and dying in an open and truthful manner, and there were countless times when my sister and I felt very alone as other people in our lives could not understand what we were going through. The palliative care nurses understood us. They listened, and they acted. Claudia, Banksia’s amazing bereavement counsellor who gave us the space to grieve, understood us.
It was this network of staff that made us feel normal at a time when nothing else was normal. They allowed us to be ourselves. They guided us, respected our decisions, respected our culture, and cared for us while we all collectively cared for mum.
Sadly my story is not a unique one. There is nothing about it that makes me any different from any other carer who is facing a myriad of their own challenges while they care for their loved ones, whether their family member is older or younger, a parent, a spouse, a sibling or a child, whether their loved one is facing a rapid decline or battling a long term illness. The details may differ, but the emotions are the same.
The desire to give the best possible care to our loved one, and allow them to live and die with dignity, is the driving force that underpins everything that Banksia does. They are a widely unknown service until you need them, and that is why I am here tonight: to acknowledge the importance of this service, and the enormous impact it has on giving people and families a choice about how and where to die.
I want to say thank you for empowering us and supporting us, and for continuing to extend that care even after our loved one is gone.
Jo (Daughter and carer)