Antonia learned her son had a brain tumour 32 years ago, she is still caring for her son while working full-time as a nurse.
When she learned her son had a tumour in his brain 32 years ago, Antonia’s life spun out of control.
A widow with three teenage children, she was already playing both mum and dad to her brood, working full-time as a nurse in a dialysis clinic in a busy regional hospital and struggling to make ends meet as a single mum.
The bleak prognosis of her 22-year-old son having just 6 months to live devastated the family and of course brought massive extra financial and emotional pressure.
Antonia refused to accept the diagnosis of the local oncologist and used her network of medical friends and colleagues to search for a doctor who could offer some hope, eventually finding a Sydney oncologist pioneering a new type of radiation treatment that targeted the tumour with the narrowest of beams.
Imagine the family’s joy as Paulo responded well to the treatment and the 6-month death sentence passed as he moved into remission.
Blood tests were taken at a follow-up appointment and a new shock followed. Paulo had AIDS.
Fast-forward to 2017, 32 years later. Antonia has had three decades of intense caring for her son – all the while holding down a full-time job.
Paulo’s cancer has returned three times, each time requiring more extensive intervention. The radiation has now caused massive scarring of the brain in the area of the tumour, and this is affecting Paulo’s mental health and causing him to become angry, aggressive, disorientated and depressed, as well as affecting some of his key functions of independent living.
The AIDS has also taken its toll. Despite being on daily medication that has kept him alive thus far, Paulo is now emaciated and weak and prone to regular infections that can quickly turn into life-threatening situations.
And mum Antonia is still there. Every day, she either visits him at home in the next suburb, or is on the phone to him several times a day.
She pays his rent, delivers meals, brings home his washing, organises medical appointments and hospital stays, takes him shopping, plays backgammon with him and is in general his one and only support person for anything and everything.
“It is relentless and exhausting,” she confesses. “I love him of course, but after three decades I am burnt out. I would so much love to have a few good years for myself… perhaps to travel or learn a new skill or to spend more time with my two daughters and their children.
“Of course, I see the girls and the grandchildren as much as I can, but it is usually crammed into a short visit between Paulo’s needs.
“They resent the fact that I have given 30 years of my life to supporting him and that I have not been there for them as much as they have wanted.
“They don’t have much of a relationship with their brother as they think he takes no responsibility for his own life and makes bad lifestyle decisions that further impact his health.
“It is a hard balancing act for me, trying to be fair with my time when Paulo is so sick and dependent.
“On top of that I am also ageing myself. I’m in my 60s and would love to be able to enjoy a few years of good health and freedom, but find I have to keep working to pay the medical and living bills as Paulo’s disability pension doesn’t go anywhere near paying his rent, food, medical, pharmaceutical or transport costs.
“Plus, both daughters are single mums and I try and top up their budgets as much as I can.
“As a working carer, I really don’t get any support from any services or any government payments. I just keep working long hours to make the money I need to support my family.
“I don’t talk to anyone about my son or his issues. I doubt there would be anyone at work who knows anything about that side of my life. I just keep turning up, smiling, being professional, getting the job done and going home to see what needs doing for Paulo at the end of the day.
“If I need time for his appointments or to care more intensely for him, I just take unpaid leave. Nursing is flexible like that – I can pick up shifts or drop them as required.
“While that is good from a flexibility point of view, losing the income really hurts, so I try and make it up with longer shifts during the times when Paulo is better.”