For almost three years, Joana Andre Garrido worked at Western Sydney Local Health District (WSLHD)* as a patient and carer experience officer, providing support, advocacy and information to carers through the WSLHD Carer Program. Little did she know she would be quickly putting this knowledge into use in her personal life.
In September 2021, life changed suddenly for Joana and her family when doctors diagnosed Stage IV Melanoma inside her mum Teresa’s hip bone. The difficult decision was made to amputate Teresa’s right leg and part of her right hip.
This National Carers Week, Joana shares the story of how overnight, she became a carer.
“There are so many things that come with being a carer that no one tells you; and I would’ve never thought that it could be me, especially at such a young age.
I have the utmost respect for anyone who manages caring responsibilities alongside their work and other commitments.
Caring for someone with a physical disability and navigating the health system as a consumer is a huge learning curve, but as a family we have quickly adapted to a new “normal”.
Being sick is not a choice and we are extremely proud of mum’s strength and achievements so far. At times I know she feels she is a problem, but what she can’t see is that we are doing what we know she would do for us.
Following her surgery, mum spent two months in hospital and rehabilitation. She then underwent two rounds of immunotherapy, 20 rounds of radiation and had neurosurgery.
These months were full of ups and downs for the whole family. Together we shed many tears, anxiously awaited test results, learned how to successfully sleep in a hospital chair, were filled with pride every time mum made progress, smiled together and felt grateful to have a supportive network around us.
I am thankful to be with my mum during the difficult times, as well as there to celebrate the small wins.
Mum is currently on target therapy and continues with her multiple clinical and specialist appointments which occur multiple times a week and aren’t close to home.
As mum doesn’t speak English and is now unable to drive, someone always needs to be around to attend her appointments with her. My dad Joao, sister Henar and I all work full-time so we take it in turns.
I am lucky to have a very supportive manager at work who supports me being there for my mum during those appointments and working from home to reduce my travel time.
If you are someone who has recently become a carer, I want you to know that you’re not alone. There is support out there for you.
Thank you for what you do.”
National Carers Week runs from 16 to 22 October 2022 and is an opportunity to recognise and celebrate the 2.65 million Australians who provide care and support to a family member or friend.
For information on information including carer support the WSLHD Carer program, carer support and program contacts, please visit www.wslhd.health.nsw.gov.au/wslhd-carer-support.
For any patient and carer experience enquiries, please email firstname.lastname@example.org.
* In September 2022, Joana began working for eHealth NSW and continues to care for her mum.