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Caring for someone with kidney disease

Caring for someone with a chronic disease can be challenging. To provide the best care, you need to look after yourself as well. That sometimes means reaching out for help – whether it’s financial, personal support, or respite care for your loved one.

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Support for carers

There are great support networks and resources available around Australia for people caring for someone with a kidney disease. Some of these include:

  • Carers Australia – the peak body representing unpaid carers in Australia. It advocates for carers, and also offers great resources online to assist them.
  • Beyond Blue – offers resources and information for carers who may be feeling depressed, anxious, or generally overwhelmed.
  • Carer Gateway, Department of Social Services – provides information about the services and support available for carers.
  • Palliative Care Australia – offers information for people living with a life-limiting illness, and their families. Most people supported by palliative care have the main goal of optimising their quality of life, which Palliative Care Australia aims to help them do.
  • Australian Government Department of Social Services – lists a number of programs, resources, and services available to Australian carers.

Financial support – there are a number of options for carers needing financial support. Many of the payments are administered through Centrelink. You can read more in this booklet summarising the financial support available to carers.

Support from family members or others

Even if you’ve chosen to take on the extensive role of caring for your loved one with kidney disease, you can still burn out. It’s OK to accept help from family members and other loved ones. It’s also OK to reach out and specifically ask for it.

You may be the dialysis expert who has to perform that particular task, but there are still other ways people can help. Someone else doing things like housework, shopping and picking up the kids from school can make a huge difference.

Gather My Crew – free online rostering tool

Gather My Crew is a great online rostering system that makes coordinating support easy. You can ask for help through the tool, then your ‘Crew Members’ (friends, family members, neighbours, colleagues, and other loved ones) can choose what tasks to pick up. Gather My Crew also sends regular reminders and updates, so everyone is kept in the loop.

The system is easy to use and free! Check out the Gather My Crew website to find out more.

Respite care

Another support option for carers is respite care. How that works will depend on what kind of dialysis your loved one is on.

  • Patients on home haemodialysis – respite carers will require access to a dialysis machine at either a local satellite dialysis unit or a home training unit to offer this service. You can discuss these options with your dialysis healthcare team.
  • Patients on peritoneal dialysis – opportunities for respite will usually involve a placement at a nursing home, for a daily payment. Most states have this as an option. You can talk to your healthcare team or a social worker for more information.

For those who can afford it, a private dialysis nurse can also be another option for respite. You can engage with one through the Department of Veterans Affairs, or independently. Dialysis Australia also provides dialysis nurses for in-home care. You can call them on 1800 994 224 or visit the Dialysis Australia website to find out more.

The My Aged Care website also offers more information about respite care.

Support and resources from Kidney Health Australia

  • Kidney Helpline – a free phone support service available Australia-wide. Our helpline offers information, support, referrals, and advice to carers (as well as patients and healthcare professionals). Call us on 1800 454 363.
  • Kidney Clubs – our support groups are located around Australia and are designed for anyone living with or affected by kidney disease, including carers. It’s a great way to connect with others in the community going through similar experiences.
  • Our Living with Kidney Failure handbook – featuring useful suggestions, the Carer’s Bill of Rights and case studies.