Carers looking after someone with a life-limiting illness help them to manage their illness and daily living. The caring role may take on many forms. You may share it with someone else.
You may be a friend, neighbour, extended family, spouse, sibling, child or parent. You may not think of yourself as a ‘carer’.
There will be different expectations of you as carer of someone with a life-limiting illness. For example:
Some people just can’t do it at all. It is ok to say no. If you cannot take on the carer role you can contribute in other ways. You can choose how you are able to help.
It is common for people with a life-limiting illness to remain at home for much of their care. As they become less able to carry out their usual tasks and care for themselves, you may find yourself in the role of carer. This means that your daily life has changed.
The downside to caring at home includes:
Carers NSW video - Caring for someone with a life-limiting illness
Providing hands-on care can change the relationship between you and the person you are caring for. You may find that you have less time for important conversations.
This can all be emotionally intense. It may have an impact on your physical and emotional wellbeing. This might include increased fatigue, anxiety and depression. These responsibilities can affect your ability to manage your role, your home and family. It is important to deal with the feelings and emotions that may arise. Talking with someone can help. If you are feeling grief or difficult emotions as a result of your carer role, talk to your health care team or to your GP who can refer you for help.
If you are caring for someone who is ill, you may also be the point of contact for other family members, work colleagues and friends.
You may also often act on behalf of the patient, talking with health professionals.
You may feel:
You may also feel:
GatherMyCrew tool to coordinate help from family, friends and neighbours
Coordinate help for friends and family
You may have fallen into this role with no training or guidance. Health professionals and some family members may have expected you to take this on. You may not have much help around the house and find it difficult to cope with what is needed. This can be a lot to take on, both practically and emotionally.
You are a vital part of the healthcare team. Talk with your health care team about what support is available. Talk with your family, friends, and neighbours about how they could help. Use tools such as the GatherMyCrew roster to keep everyone informed and to coordinate help.
Visit the CarerHelp website for information sheets and resources
Visit the Carer Gateway website: About carers
Explore additional resources
Last updated 09 July 2021