Support for Carers, Family + Friends

In this section there are resources specifically for carers – people caring for a loved one with a brain tumour. Resources include comprehensive educational guides to care-giving (to help carers look after themselves as well as the person they are caring for), various carer support websites, and mental health supports. There are also some practical apps and links to services like the National Advocacy Service that can directly help carers to navigate the application process for government financial supports through NDIS and Centrelink.

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Link Content Warning: Death / Dying

CarerHelp website

CarerHelp website
CarerHelp is an Australian website for carers who need information and resources to help them feel informed and prepared for caring for someone who is seriously ill. It also includes information to support carers when death is a possibility and for when death is near. CarerHelp has information for everyone including carers who are Aboriginal or…
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Educational Resources for Caregivers of Loved Ones with Brain Tumours (UCSF Brain Tumor Center)

Educational Resources for Caregivers of Loved Ones with Brain Tumours (UCSF Brain Tumor Center)
The University of California San Francisco (UCSF) has compiled educational resources for caregivers of loved ones with brain tumours, including caregiving handbooks and recorded webinars. While these are American resources, much of the information is relevant in Australia. Resources include: managing care at home, symptoms of brain tumours, side…
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Providing Effective Care at Home and at the End of Life – a PDF Handbook for Patients with a Terminal Brain Tumour and their Family Caregivers (UCSF).

Providing Effective Care at Home and at the End of Life – a PDF Handbook for Patients with a Terminal Brain Tumour and their Family Caregivers (UCSF).
The goal of this handbook is to provide an overview of what a patient and their family and caregivers may expect when facing a progressive, life-threatening brain tumour. This handbook is specifically focused on providing effective care at home and at the end of life. The handbook is produced by the University of California San Francisco (UCSF) and…
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Gather My Crew (An Australian App to Help Request and Manage Support From Your Friends)

Gather My Crew (An Australian App to Help Request and Manage Support From Your Friends)
Asking for help isn't always easy. We are often reluctant to reach out, even when we need it most. The "Gather My Crew" app is a way to use technology to coordinate with friends and family, to turn offers of ‘let me know what I can do’ into action that meets your unique needs. You can use the app to request help for specific…
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Epilepsy Foundation

Epilepsy Foundation
The Epilepsy Foundation delivers support programs for people and families living with epilepsy in Australia. This includes information, resources, and training tailored for individuals, families, schools, workplaces and community settings. The website also includes seizure first aid, epilepsy and seizure management tools, and practical resources for…
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MediStays (Australian Accomodation Service to Support Hospital Visits or Disability-Related Stays)

MediStays (Australian Accomodation Service to Support Hospital Visits or Disability-Related Stays)
MediStays is a nationwide service connecting Australians and their families with accommodation options to support a hospital visit or disability-related stay. Whether you’re a patient on your way to hospital, a friend or family member paying a visit, a person with a disability looking for accommodation as part of your NDIS plan, or a health worker…
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Facing End of Life (Cancer Council PDF Guide)

Facing End of Life (Cancer Council PDF Guide)
Cancer Council have a guide for people dying with cancer, their family and friends. The chapters in outline how you might feel knowing you are dying, what might happen physically, and how you can prepare for death. There is also information for carers, family and friends. This may be the first time you have read about end-of-life matters and it may…
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Carer Gateway website (Australian Government)

Carer Gateway website (Australian Government)
Carer Gateway is an Australian Government program that provides free services and support for carers, including in-person and phone counselling, online skills courses, tailored support packages including access to emergency respite if you suddenly become ill and can no longer provide care for your loved one.
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We’ve curated lots of information we think might be useful to you and your loved ones. If you think the content we’ve curated isn’t informative or the link is broken, let us know at BT-online@unimelb.edu.au.

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