Support for carers
Although carers may have similar responsibilities and need support at any stage of cancer, their workload usually intensifies if the disease progresses. Most people with life-limiting cancer spend almost all their last year at home, and their carers need additional support with many aspects of the role.
Below we outline common issues you may face as you care for someone with advanced cancer, and list who can help and where to find more information.
I’d tell other carers to get as much information as you can about what your journey will be like, speak to others further down the track, and try to join a support group. Get ready to be out of your comfort zone, but you just have to get on with it.
Learn more about:
- Making treatment decisions
- Managing symptoms
- Setting up the home
- Preparing food and drink
- Providing personal care
- Coping with the increased workload
- Organising finances
- Making legal arrangements
- Dealing with the emotional impact
- Communicating with family and friends
- Exploring the meaning of the person’s life
- Maintaining hope
It can be confronting and confusing for the person to work out whether to keep pursuing active treatments for the cancer. This decision is theirs alone, but they are likely to discuss it with you. If you are the person’s substitute decision-maker, you may feel a heavy responsibility in making this decision for them.
Who can help – Palliative care team, cancer specialists, GP, social worker
You may find that symptoms such as pain become more complex to manage, especially because the person is likely to experience a number of symptoms at the same time. However, early medical attention can provide relief and make symptoms easier to manage.
Who can help – Palliative care specialist, palliative care nurse, pain specialist, cancer specialists, GP, community nurse, physiotherapist
Setting up the home
To make it easier and safer to care for the person at home, you may need to modify the environment (e.g. handrails on steps and in the shower) or buy or rent equipment (e.g. shower and toilet chairs, bed pans, walker, harness for helping to lift the person, hospital bed).
Who can help – Occupational therapist
Preparing food and drink
It can be challenging to prepare food and drink for a person with advanced cancer, especially if they find it hard to swallow or have lost their appetite. In the very late stages, it is natural to have little appetite so they shouldn’t be forced to eat or drink, but this can be distressing for carers.
Who can help – Occupational therapist
What to read – Nutrition and Cancer
Providing personal care
If the person becomes weak or unwell, they may need assistance with showering and toileting. If they are unable to get out of bed, they may need sponge baths and help to use a bed pan or urinal bottle. Some carers prefer to provide this support themselves and just need some guidance from a health professional. Other carers feel uncomfortable doing this personal care and prefer to have it given by someone else.
Who can help – Community care workers (ask your treatment team or GP for a referral, or contact My Aged Care on 1800 200 422)
Coping with the increased workload
You may find it difficult to manage all the extra tasks involved in caring for someone with advanced cancer, especially if you have other responsibilities such as paid work or parenting, or if you have your own health issues. There are a range of services available to support you in your caring role.
Who can help – Social worker, Cancer Council 13 11 20, My Aged Care(1800 200 422), home help provided by local councils or aged care services, Commonwealth Respite and Carelink Centres, volunteers, family and friends
You may need to manage the financial impact of advanced cancer. This can include finding additional financial support and possibly accessing superannuation and insurance. Seek professional advice before changing any financial arrangements.
Who can help – Social worker, Cancer Council Financial Referral Service on 13 11 20, financial counsellor, financial adviser
What to read – Cancer and Your Finances
Making legal arrangements
If the person hasn’t already done so, it is important to make sure their wishes for the future have been documented. This can include preparing a will, appointing a substitute decision-maker, and preparing an advance care directive.
Who can help – Social worker, Cancer Council Legal Referral Service on 13 11 20, Advance Care Planning Advisory Service on 1300 208 582
Dealing with the emotional impact
A diagnosis of advanced cancer can be distressing for all who are involved, and it is not unusual to experience grief and symptoms of anxiety and depression. Although strong emotions are natural at this time, seek professional help if they are interfering with the ability to function or enjoy some aspects of life.
Who can help – GP, social worker, psychologist, counsellor or psychiatrist, support groups, Cancer Council 13 11 20, National Carer Counselling Program 1800 242 636, beyondblue 1300 22 4636, Lifeline13 11 14
Communicating with family and friends
The carer is often the main point of contact for family and friends. It can be challenging to cope with people’s reactions when you are struggling with your own. Giving constant updates as the disease progresses can also be draining and time-consuming.
Who can help – Social worker, Cancer Council 13 11 20, particular family members or friends who can relay updates, social media platforms such as Facebook
What to read – Talking to Kids About Cancer
Exploring the meaning of the person’s life
This may be a time when the person wants to reflect on their life and make sense of their experience. They may appreciate help recording their memories and insights in some way. Some people also want to explore spirituality, even if they have never been religious.
Who can help – Social worker, psychologist or counsellor (ask your treatment team or GP for a referral), spiritual care practitioner (also called a pastoral carer, usually available through your treatment centre), religious leader
The carer can have an important role in helping the person with cancer find reasons to be hopeful. It is possible to be realistic while still maintaining hope. As the disease progresses, the things the person hopes for may change. For example, they may hope to visit special places or spend time with family and friends.
Who can help – Social worker, psychologist or counsellor, spiritual care practitioner (pastoral carer), family and friends
Tina Chivende, Social Worker, Cancer Psychosocial Service, Canberra Region Cancer Centre, ACT; Gabrielle Asprey, Telephone Support Group Facilitator, Cancer Council NSW; Dr Ben Britton, Senior Clinical and Health Psychologist, Calvary Mater Newcastle and John Hunter Hospital, and Conjoint Lecturer, School of Medicine and Public Health, University of Newcastle, NSW; Valmai Goodwin, Psychologist, Cancer Counselling Service, Cancer Council QLD; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Zoe Mitchell, Senior Social Worker, Palliative Care, Fiona Stanley Hospital, WA; Amber Rose, Consumer; Carolina Simpson, Policy and Development Officer, Carers NSW.
View the Cancer Council NSW editorial policy.
Click below to download a PDF booklet on this topic.