Palliative Care NSW would like to acknowledge and celebrate the work of carers during this National Carers Week 2023.

This week we talked to Palliative Care Social Worker, Rio Stephens, from Camden and Campbelltown Hospitals.

Rio shared some valuable ideas on how we can provide support to the all the people who are carers in our lives. Whether they are a colleague, neighbour, or your best friend, there’s likely something you can do to support them in this challenging role.

  1. In your opinion what is it most important to understand about caring for someone with a life-limiting illness?

No carer expects a thank you but often their needs (emotional, psychological, health, practical) are “forgotten”.

Caring for a person with life limiting illness is a commitment and sometimes one that is full of guilt especially around spending time with other people in the family (e.g. other children if it’s a child that has the life limiting illness)

A parent/grandparent/sibling/spouse/partner who become carers with someone who has a life limiting illness don’t often get asked if they would like to be carers, it can be thrusted upon them (they take it on without complaints. I often hear “it’s what she/he would have done for me” or “that’s what we do”) but it changes the relationship dynamics and there is a loss in their previous relationship dynamics. We shouldn’t forget the loss of roles within the family, in place of a new role.

  1. Carers often prioritise the needs of others – what are some ways they can take care of themselves?

Practical ways – someone to stay with the caree so carers can have a meaningful time out – coffee with friends, walking, gardening, something that is about the carer (what did they enjoy as self-care before they became a carer for someone with a life limiting illness)

Asking directly the individual carer what they would like to do.

  1. As a friend, neighbour or colleague what is the best way to offer help to a person who is caring for someone with a life-limiting illness?

Practical supports, TLC, listening without necessarily giving unwanted advice, checking in – again, asking directly.

Depending on your relationship/dynamics with colleagues, it could be as simple as understanding and not questioning/doubting time off work.

  1. Thinking about grief and bereavement – what advice can you offer carers of people with a life-limiting illness?

Be kind to yourself and know you did the best you could, given the daily challenges you faced caring for someone with a life limiting illness.