For Family, friends and caregivers

How to provide emotional and practical support

What often helps:

• Listen first. There’s no need to try to fix everything. Just listening can be incredibly powerful.
• Offer specific, practical help, like:
  • meals
  • laundry
  • housework
  • childcare
  • school runs
  • driving to appointments
  • pet care.
• Be present. Just sitting together, talking, watching a show, or taking a walk.
• Ask, don’t assume. ‘What do you need right now?’ ‘How can today be easier?’
• Respect boundaries and decisions. Their bodies, their decisions.
• Treat them as the same person. Not fragile, just navigating and coming to terms with a lot.
• Maintain routines if possible. Ordinary moments can be deeply reassuring.

What often doesn’t help (and what to try instead):

• Saying ‘everything will be fine’ or ‘stay positive’. Instead, try ‘This is hard. I’m here for you.’
• Sharing stories of people who died from cancer. Instead, ask ‘Is it helpful to hear about other people’s experiences?’
• Offering unsolicited medical advice. Instead, try ‘Would you like me to come with you to your next appointment?’
• Disappearing because you don’t know what to say. Instead, tell them ‘I don’t have the right words, but I care. Can I drop dinner on Wednesday?’
• Making it about you and your feelings. Instead, try ‘I’m feeling a lot too. I’ll get some support myself so I can be here for you’.

Supporting different family members:

For partners: You may become a carer while still being a partner. Roles change – this is normal. Make time to connect as a couple, not just about cancer. You don’t have to be strong all the time – asking for help for yourself is a strength.

For parents: Wanting to protect your adult child is natural. Offer support without taking over. Ask how involved they want you to be and check in to see if that has changed.

For adult children: The role reversal can be difficult. It can be challenging to balance caring for your parent with the rest of your life. It’s okay to set boundaries and share tasks. No one can carry everything alone.

For siblings, friends and chosen family: You’re part of the circle. Practical help and a steady presence count for a lot. Coordinate offers of help, so your person doesn’t have to manage the helpers.

Caring for yourself while you care for someone else

Caring for someone with cancer can be exhausting – physically and emotionally.

Signs of carer burnout

• Constant exhaustion
• Feeling resentful or irritable
• Withdrawing from friends
• Health problems
• Anxiety or depression
• Feeling like you can’t cope

What can help

• Accept help from others
• Take breaks (this isn’t selfish)
• Keep up activities you enjoy
• Stay connected to friends
• See your own doctor
• Consider counselling
• Join a carers support group

Financial support

• Carer Payment – income- and asset-tested income support if you’re providing constant daily care (you may work up to limited hours).
• Carer Allowance – a fortnightly supplement if providing daily care (can access this while working or studying).
• Carer Supplement – an automatic annual top‑up for people receiving Carer Payment and/or Carer Allowance.
• Carer Leave - Time off work (paid or unpaid).
• Talk to a social worker about entitlements and how to apply.

Respite care (who to call and what you can get)

If your person is under 65 years of age:

• Your main pathway is Carer Gateway for both emergency respite (24/7) and planned respite. They can organise in-home or short-term residential respite, where available. Call 1800 422 737.
• Local palliative care services can coordinate short‑term support and carer breaks alongside symptom management. Ask your treating team or hospital social worker for a referral.

If your person is 65 years or older (or 50+ for Aboriginal and Torres Strait Islander peoples):

• Register with My Aged Care. Respite can be arranged at home, in the community or in an aged care home, including emergency respite (via Carer Gateway).

Where to get help

A hospital social worker is often the best place to get information about carer supports.

Useful websites and links:

• Carers Australia (information and support for carers)
• Carer Gateway (respite and carer supports): 1800 422 737 (24/7 for emergencies)
• My Aged Care (65+ or 50+ for Aboriginal or Torres Strait Islander peoples)
• Young Carers Network (support for young people under 25 years of age caring for a family member or friend)
• Cancer Council – Carer Information Hub (links to available resources for carers)

Anticipatory loss and grief

What it is

Awareness of the loss you will experience can result in anticipatory grief. This is a complex mixture of feelings that might include:

• sadness
• fear
• anger
• resentment.

Many families living with MBC face this for months or years. They hold the knowledge of future loss while trying to make the most of now.

Common experiences

• Waves of emotion (and sometimes numbness) that come and go
• Worry about ‘how long’ and ‘what will it be like’
• Tension between planning ahead and wanting life to feel normal

What can help (small, doable steps)

• Name it. Saying ‘this is anticipatory grief’ can make it feel less lonely or confusing.
• Make space for all your emotions. It’s okay to grieve and laugh, plan and hope at the same time.

Navigating healthcare systems

Coming to appointments

How to be helpful:

• Agree on your role beforehand. Will you be the note-taker? Question-asker? Quiet support? Agree on 1-3 priority questions you want to ask.
• Take notes or (with permission) record the discussion. Ask the clinician to repeat the plan including key dates for treatment and scans at the end.
• Bring the essentials, such as a list of current medications including any supplements or requests for repeat prescriptions.
• Remember information to relay to other family members and friends. But, protect privacy – check in to see what your person is okay to share with others and what should stay private.
• Ask if you can join by telehealth or phone if you can’t be there in person.

What not to do:

• Answer for them or dominate the conversation
• Push your opinion on treatment decisions
• Share information they wanted kept private

Advocating when needed

Sometimes you need to speak up, especially if your loved one:

• is exhausted
• has asked you to
• has pain/symptoms that aren’t being controlled.

How to advocate effectively:

• Be clear and specific: ‘Their pain is not controlled despite the current medication’.
• Ask what the next step is: ‘What can we change today?’ ‘When (and who) should we call if this doesn’t improve?’
• Request to speak to a senior doctor or someone from the palliative care/pain team if symptoms aren’t improving or decisions feel unclear.
• Clarify the treatment plan in writing (including scripts, doses, contacts, after-hours numbers).
• Stay calm and be persistent. You’re there to help your person be heard.

Providing support towards the end

Supporting a loved one when their health worsens:

What helps

• Be present. Quiet company counts. Short visits are okay.
• Respect their wishes. Follow their preferences for visitors, treatments and where they want to be.
• Listen to their fears. You don’t have to fix things, just let them know ‘I’m here. Tell me what feels hardest today’.
• Helping with practical matters. This might include planning for end-of-life (contacts, key documents, personal wishes).
• Making memory projects together if they want to, such as photos, voice notes, letters.
• Taking care of yourself so you can be there.
• Connect and work closely with their palliative care team.

When death is approaching

You might notice a loved one:

• sleeps more and is harder to wake
• has less interest in food and drink
• begins to withdraw or has fewer words
• shows confusion or agitation
• experiences changes in breathing, like pauses or shallow breaths.

After death

Immediate practical steps

• Take the time you need, there is no rush.
• Speak to the oncology team, palliative care team or GP. They’ll confirm what to do next and organise certification.
• Contact a funeral home (if already chosen, follow the plan).
• Let immediate family/key people know.

If the death happens at home, your team will tell you exactly who to call first and what to do next.

Looking after yourself

• Grief is different for everyone and there is no timeline.
• Grief is not linear, and the ‘5 stages of grief’ idea is not how most people experience it.
• You may feel significant shock and that the grief comes in waves.
• Some days (and some dates) will be harder than others.
• You may feel relief as well as sadness, especially after a long illness. This is normal.

Getting support

• Bereavement support through your palliative care/cancer service (they may offer counselling and follow-up calls).
• Your GP can refer you to a psychologist (Medicare rebates may be available).
• Support groups for people who have lost someone to cancer.
• Grief Australia (information and counselling options).
• Many hospitals also offer pastoral/spiritual care and bereavement support.

Support for grieving children

Children grieve differently at different ages.

What helps:

• Age-appropriate honesty (simple words, small pieces of truth, repeated as needed)
• Maintaining routines
• Letting them express feelings in their own way
• Don’t hide your own grief, instead, show it in a contained, reassuring way
• Counselling if needed (especially for big behaviour or sleep changes)
• Memory activities (drawings, a memory box, special places)

Resources:

• Canteen: For young people who have lost someone to cancer
• School counsellors
• Children’s grief counselling services, such as the National Centre for Childhood Grief