How to provide emotional and practical support
What often helps:
- Listening without trying to fix everything
- Practical help: meals, housework, childcare, driving to appointments
- Being present - just sitting together, talking and offering a distraction from concern or pain
- Asking “What do you need right now?”
- Respecting their boundaries and decisions
- Treating them normally, not like they’re fragile
- Remembering they’re still the same person
What often doesn’t help:
- Saying “everything will be fine” or “stay positive”
- Sharing stories of people who died from cancer
- Offering unsolicited medical advice
- Disappearing because you don’t know what to say
- Making it about you and your feelings
- Expecting them to comfort you
Supporting different family members
- For partners - You may become a carer while still being a partner. Your relationship will 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 either.
- For parents - It’s natural to want to protect them, but they’re an adult making their own decisions. Offer support without taking over.
- For adult children - The role reversal can be difficult. Balance caring for your parent with your own family responsibilities. It’s okay to set boundaries.
Caring for yourself as a caregiver
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 counseling
- Join a carers support group
You can’t pour from an empty cup. Looking after yourself means you can better support your loved one.
Financial support
- Carer Payment - If caring full-time and meet income test
- Carer Allowance - Supplement if providing daily care (can get while working)
- Carer Leave - Time off work (paid or unpaid)
- Talk to a social worker about entitlements
Respite care
- In-home respite (someone comes to help for a few hours)
- Residential respite (your loved one stays somewhere for days or weeks)
- This gives you essential breaks
Services to help at home
- Community nurses
- Meals on Wheels
- Home help services
- Equipment (shower chairs, commodes, hospital bed)
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
- Carer Gateway
- My Aged Care (not just for older people)
Navigating healthcare systems
Coming to appointments
How to be helpful:
- Take notes or record the conversation (ask permission first)
- Ask questions your loved one might forget
- Bring a list of current medications
- Remember information to relay to other family members
- Ask if you can join on telehealth or the phone
What not to do:
- Answer for them
- Push your opinion on treatment decisions
- Dominate the conversation
- Share information they wanted kept private
Family members and caregivers might help with booking appointments. This could be doctors appointments, scans, blood tests or general life appointments like keeping up with dentist appointments and banking.
It can be quite overwhelming for people living with MBC to keep up with the amount of appointments they might need week to week and month to month. Helping them to book, record and keeping on top of them, can help to ease the mental load.
Advocating when needed
Sometimes you need to speak up for your loved one. This might be appropriate when they’re too unwell or exhausted to speak for themselves, if they’ve asked you to, or their pain/symptoms aren’t being managed.
How to advocate effectively:
- Be clear and specific: “Their pain is not controlled despite the current medication”
- Ask what the next step is
- Request to speak to a senior doctor if needed
- Keep notes of conversations
- Stay calm, but be persistent
Grief and bereavement support
Supporting a loved one when their health worsens:
What helps
- Being present
- Respecting their wishes
- Listening to their fears
- Helping with practical matters. This might include planning for end of life.
- Making memory projects together if they want to
- 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:
- is sleeping more
- is less interested in food and drink
- begins to withdraw
- shows signs of confusion or agitation
- experiences changes in breathing.
Cry in front of them. Tell them you’ll be okay. It’s important to talk to your loved one, even if they seem unable to hear it. It’s also okay if you don’t know what to say.
There is often support in hospital to help you through this time. Ask to talk to a hospital social worker or xxxx if you want help through this time.
After death
Immediate practical steps:
- Call the
oncology team,palliative care team or doctor - Contact funeral home
- Contact immediate family
Looking after yourself:
- Grief is different for everyone
- There’s no timeline for grieving
- Grief is not linear, and the “5 stages of grief” have been widely debunked
- You may feel significant shock and that the grief comes in waves. This is how our brain protects us.
- Some days (and indeed some years) will be harder than others, this can be extra hard at certain times of the year (e.g. special dates and holidays)
- You may feel relief as well as sadness - this is normal
Getting support:
- Bereavement counselling through cancer services
- GP can refer to psychologist (Medicare rebates available)
- Support groups for people who have lost someone to cancer
- Australian Centre for Grief and Bereavement
- Some hospitals provide bereavement support including pastoral care
Support for grieving children
Children grieve differently at different ages.
What helps:
- Age-appropriate honesty
- Maintaining routine
- Letting them express feelings in their own way
- Not hiding your own grief (in an appropriate way)
- Counseling if needed
- Memory activities
Resources:
- Canteen: For young people who have lost someone to cancer
- School counselors
- Children’s grief counseling services