For many people, having a partner, family member, friend or carer who can accompany and support them throughout their cancer experience is very important. This person (or team) becomes an important part of the person’s life and can make a big difference in their cancer experience.
When cancer occurs later in life, the main carer, whether this is a partner or friend, may also be an older person often with their own health and wellbeing issues.
Carers everywhere provide incredible support and contribution to the care of people across Australia, providing practical help, such as help with getting to or managing multiple appointments or medications, and with emotional support through providing company and understanding.
“The carers input can be as vitally important as that of the patients, for example when the patient is to unwell to communicate, it’s the carer who does that”Marilyn, older carer
Carers can also be advocates – speaking on behalf of person, making sure their needs are known, especially when the person with cancer may be very unwell.
People who have been in a caring role, often describe it as valuable and rewarding, but acknowledge that it can be exhausting and demanding. Carers usually put the patient first, worry about them and coping with a challenging schedule of caring.
In the Tour de Cure Caregivers study, carers over the age of 65 years were asked what they found most challenging when caring for a person with cancer. Carers reported that travelling to and from and keeping track of appointments were some of the most challenging aspects of caring.
Carers also identified trying to understand and interpret medical information as challenging. If you are a carer and you are given information that you do not understand, ask the doctor or nurse to repeat what they have said in a different way.
Tell the cancer team if you haven’t understood. It is the medical teams’ responsibility to make sure they explain things well – it is not a patient or carers’ responsibility to be able to interpret complex medical information.
Is this video Jill talks about being a carer and advocate for her partner Elizabeth. She talks about exhaustion and being strong, about finding support available and fulfilling her partner’s wishes.
Support for Carers
Research from across the world show that when carers are well supported, both they and the patient they are caring for have better health outcomes.
But research also shows that carers tend to be reluctant to seek support for themselves, often putting the needs of the patient first. It is important that carers are reminded that support is available for them too, and that they are supported to find and access it.