Navigating a life-limiting illness and palliative care can be confusing and overwhelming for all involved. There are key formal support services designed specifically to help you get the information you need to navigate your palliative care journey.
PalAssist
PalAssist is available from 7am-7pm, 7 days a week. It is a free service for anyone who has a life-limiting illness or condition, and/or their families and carers. A team of nursing and allied health professionals provide accurate information, compassionate support, and individualised advice.
CarerHelp
CarerHelp brings together a range of tools, videos, and information to support carers. CarerHelp has developed five pathways that are commonly experienced over time when caring for someone approaching the end of life: when someone needs care; caring when death is a possibility; preparing for dying; when the person is dying and after caring.
CarerGateway
Carer Gateway is an Australian Government program providing free services and support for carers.
They offer a wide range of services including:
- in-person and online peer support groups
- tailored support packages to help with transport, education support, cooking and cleaning services, and assistance with shopping.
- in-person and phone counselling
- self-guided and in-person coaching
- online skills courses to support your wellbeing
- access to planned and emergency respite
Crisis support lines
Emotional distress and need for support doesn’t only occur during business hours, nor does it only happen at predictable and scheduled times. You may need support in the middle of the night, you may need support when you feel overwhelmed or if you feel suicidal. There are a range of support services that you can access online or via the phone, 24 hours a day, 7 days a week.
Online supports
When you are navigating a life-limiting illness you may not have the time or strength to attend appointments to seek emotional support for yourself. On-line options provide a more easily accessible support for your mental wellbeing, from the comfort of your own home. There are online supports available to help you navigate your changed world.
Specific illness supports
There are many disease and illness support organisations in Australia specific to the type of life-limiting illness you are navigating. CareSearch has compiled a list of key websites and illness specific information sheets and booklets to help you navigate your specific life-limiting condition and associated conditions.
Identifying your personal support network
In addition to the formal support networks outlined above, you may also have the support of family, friends, colleagues and your community. Sometimes we don’t even realise the supports we have available to us. The Circles of Care worksheet can be used to map out your existing supports and identify where additional supports are needed.
Once you have identified your formal and informal support networks, you can then consider how best to leverage their offers of support.
Drawing on your support networks
We often hear from the friends and family of those living with a life-limiting illness that they don’t know what help to provide. Similarly, those facing a life-limiting illness say they don’t want to be a burden on others and so don’t take up offers of help. You might also find you are overwhelmed with offers of meals, but what you really need is other forms of help.
Identifying practical support that friends, family, colleagues, or neighbours can provide can lighten your load. Accepting help can ease some of your burden, allowing you time to spend on things that matter most to you. Giving people something to do helps them to feel good too.
HELP App
The HELP App is a practical tool to help your family and friends coordinate social and practical support together. The HELP App allows you to list tasks that you would like support with, co-ordinate support, roster appointments, provide updates and even have private conversations with your inner circle. The App also offers education and resources to support you and your support network. You can even ask someone else to set up the App and manage it for you.