I am caring for someone

Your GP may be the health professional who first talks about the possibility of dying. Life-limiting or terminal illnesses include cancer, motor neurone disease, advanced liver disease and dementia. You may be quite shocked to realise death is now part of the illness.

This conversation can be challenging. Realising that the person you are caring for is likely to die from an illness or disease that cannot be cured is a very difficult part of a carer’s journey. You may take some time to develop a good understanding of what is involved and what needs to be done.

The CarerSearch website provides information and resources to support family members and carers caring for someone in the last months or years of life.

Helpful resource –  Palliative Care Australia: Asking questions can help

You can use this prompt list when talking to the doctor or another health care professional who is involved with the care of the person you are caring for.

Realising that the person you are caring for is likely to die from an illness or disease that cannot be cured is a very difficult part of the caring journey. Palliative care is medical care that focuses on providing relief from pain and other symptoms of a serious progressive illness. It also supports the family and the carer. The aim is to help people live their life comfortably and as fully as possible. It offers a range of different health support which can be provided at home, in hospital or in residential aged care depending on the person’s needs.

Palliative care can be accessed from the time of diagnosis. Early referral to palliative care can often prolong life and certainly supports a better quality of life.

Many people don’t see themselves as carers. They are just children, parents, partners, relatives or friends who care for someone close to them. Carers are people who look after someone who needs help with their day-to-day living. A carer (under the Australian Government Carer Recognition Act 2010) is someone who gives care and support to a relative or friend who has a disability, has a medical condition (terminal or chronic illness), has a mental illness or is frail because they are old. It can be valuable to acknowledge your role as a carer. Carers can get a wide range of help – from counselling and peer support groups, to respite care, home help and equipment.

Helpful resource – CarerSearch: How to Care

This section of the CareSearch website is for carers who need information and resources to help them feel informed and prepared for caring for someone who is seriously ill.

When you are caring for someone who has a life liming illness, you should seek services and support that are helpful. There are different types of supports and services that are available.

If you are working, talk to your employer about carer leave.

Your GP or palliative care service can provide information on:

• resources such as equipment needed to aid care at home
• planned and emergency respite care services to support carers
• links to other services such as home help and financial support
• financial support, including prompt access to the carers allowance
• information and support if they are the person’s substitute decision-maker (attorney, enduring guardian, or medical treatment decision maker)
• bereavement care to the family and carers once the person has died.

Carer Gateway provides a range of free services and support just for carers. Services are delivered in-person, online and over the phone. These services and supports include:

• In-person and online peer support groups
• Tailored support packages
• In-person and phone counselling
• In-person and online self-guided coaching
• Online skills courses
• Access to emergency respite if you suddenly find you can’t provide care.

Check out the Palliative Care Connect database of South Australian services and supports to find services near you.

Helpful resource – Palliative Care SA: Palliative Caring booklet

This booklet contains information for families and carers who are caring for an older person with a life-limiting illness in South Australia.

Caring for someone at home will require some changes to your routines and may require changes to your home to provide a suitable environment. Your GP or the palliative care service will provide information about clinical care services and equipment hire if needed.

Check if you are eligible to receive support through aged care. Talk to your GP about registering with My Aged Care for any government-funded aged care services. This could be domestic help or support with daily care. There are also private providers who can provide care and support. Patient Transport Assistance schemes can make getting to appointments easier.

Carer Gateway has lots of practical suggestions on help you can get at home that can make your life easier.

Your local council may also have community-based services. Check out the Palliative Care Connect database of South Australian services and supports to find services near you.

Helpful resource – CareSearch: Practical Caring

This webpage provides information on common care activities and also outlines how you might need to set up your home for caring.

Working while caring for someone with palliative care need can be hard. However, it can also be very rewarding. As well as providing income, you may find that working gives you a different role and perspective that is important to you and your well being.

You may not have realised that you have rights as a carer. Under the Fair Work Act, which applies nationally to most employees, carers cannot be discriminated against, can ask for flexible working arrangements, and can access leave for caring. It is worth talking with your employer about your situation. Many employers will have policies in place that can help you.

You may be eligible for some financial assistance while caring, especially if you have stopped working or reduced your work hours in order to care. The Services Australia website provide information on carer payments.

As a working carer, having a network of friends and family members to support you and be additional care resources is important. It can help you in balancing work and caring commitments. The HELP App can be used to identify specific care needs and create a meaningful support network.

Helpful resource – Australian Government Carer Gateway: Working while caring

This webpage provides practical information on working while caring.

Caring can be exhausting. As well as the physical demands on supporting someone, you may feel emotionally exhausted with worry and stress. You also tend to be thinking of the needs of the person you are caring for. However, It is important that you also take care of yourself.

If it is too much now to continue, reach out to friends and family for immediate relief with your caring responsibilities. You can also talk to your GP or call Carer Gateway on 1800 422 737 Monday-Friday, 8am-5pm to discuss additional services and supports. Emergency respite is available.

It can be hard but you need to prioritise your health and well-being to be able to continue to care.. Make sure you follow up on your health checks and appointments. Think about what is important to you maintain a sense of self and well-being. Many carers create a self-care plan to remind them to prioritise time for themselves. It’s ok to go out for a walk or catch up with friends.

Don’t be afraid to ask for support when it starts to get harder. You can ask friends and family to provide you with regular timeouts and more significant breaks. You may need to take a short holiday to recharge. You should also share your concerns with your doctor or the palliative care nurse.

And if you cannot manage, talk to your health care team about emergency respite. You can also discuss what other options for care there are.

Helpful resource – Carer Gateway, Australian Government: Looking after yourself

As a carer, you’ll often put the needs of the person you care for before your own needs. It’s OK to look after yourself too.

Family, friends, neighbours and work colleagues will all want to help. Many of us don’t know how to help and many of us don’t feel comfortable asking for or accepting help.

It can be easier to accept help if you have a list of practical things that people can do. This can include:

• Help with practical tasks such as preparing a meal, doing washing or cutting the lawns
• Providing you with a break by sitting with the person who is ill
• Helping with transport and appointments
• Offering to care for children after school or taking them to sport
• Walking the dog or taking the cat to the vet

If you are comfortable online, you could set up a Facebook group and post what you need this week in terms of support.

Helpful resource – HELP Project, LaTrobe University: HELP app

The Healthy End of Life Plan (HELP app) can help you to put things in place to make the most of all the personal and social networks around you.

You may be a carer or family member for an older person living in residential aged care. Some people will develop a serious illness while living in the aged care home while others will enter residential aged care because they can not be cared for at home anymore.

You may still be providing frequent and hands on care for the older person while they are living in residential aged care. You may worry about changes and health problems. Communication is a major part of quality care – between care providers, residents, staff and family members. Being able to share information is reassuring and helps the facility to develop the best care plan.

Sometimes a change in care needs will prompt a case conference or family meeting. This is a good opportunity to talk about care planning, including end of life care, if needed. If there are language or cultural issues, think about involving an interpreter or a community advocate to help with important discussions. You have an important role in advocating for the person’s needs and ensuring staff are aware of changes or new symptoms.

If a palliative care emergency arises, the care facility may call an ambulance, particularly after hours if the GP or specialist palliative care service is unavailable. The emergency department may not be the most appropriate or desired place of care for an older person with a life-limiting illness, especially someone living with dementia. To ensure paramedics treat the person according to their wishes, their goals of care must be clearly documented and accessible. In South Australia, health professionals, including paramedics, use a Resuscitation Plan 7 Step Pathway to understand patient wishes and act accordingly. Speak to the care home about their processes for documenting a resident’s goals of care.

Helpful resource – Palliative Care Australia: 10 questions to ask about palliative care in residential aged care

For many residents in aged care, the staff in the service will be able to provide the care you need. Other residents may need specialist palliative care.

As we age, we may need more support to manage our lives. Inevitably as we get older, we are also coming closer to dying. You may be caring for an older person by yourself or with a network of family and friends.

Support for an older person is not only direct hands-on care but can involve emotional support as well as support with financial and legal matters. You may need to assist with advance care planning and with power of attorney, wills and guardianship. Advance care planning involves planning for your future health care and communicating your treatment preferences.

When more care is needed, you may need to organise aged care services to help with care. My AgedCare explains aged care options and how to access them.

While talking about death is not easy for most people, you may need to start or encourage conversations about preferences and care at the end of life.

Helpful resource – CareSearch: Older Australia

This section provides information on ageing, care needs and aged care, and preparing for death and dying as an older person.

Most families and carers find it important to have a plan about how they will manage dying in the home. However, even if you know the person you care for is dying, it can be hard to predict when the death will actually happen.

You may want to learn more about the dying process and signs and symptoms indicating that death is near.

Make sure your contact list with phone numbers and emergency numbers is up to date.

Helpful resource – CareSearch: At the end

This factsheet offers gentle guidance on what to expect.

Many people who are caring for someone with advanced disease will have discussed what do when the person dies with the health care team. If the death has occurred at home and you have called an ambulance, paramedics can verify the death without needing to call the police. However, you will need to contact your doctor or palliative care service to arrange a death certificate. Usually this is very straight forward if the person was known to a doctor.

Telephone a relative or friend if you want someone to be with you. The person’s body can stay at home for as long as you wish or need, especially if you would like friends and relatives to come and say their goodbyes.

Contact the funeral company to make arrangements about when you would like them to come and care for the body and prepare for funeral arrangements.

Helpful resource – Palliative Care SA: Palliative Caring booklet

This booklet contains information for families and carers who are caring for an older person with a life-limiting illness in South Australia.

Self assessment tool will help guide you

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