Services to help you care for your loved one

It is important to know about the services designed to help you provide care, whether it’s in your own home, a hospice, residential aged-care facility or hospital.

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Services to help you care for your loved one

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It is important to know about the services designed to help you provide care, whether it’s in your own home, a hospice, residential aged-care facility or hospital.

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If you are caring for someone in the last stages of life, you may find the following services, resources and tools helpful:

Advance care planning

What is it?

An advance care directive (ACD), also known as a living will, contains instructions about the type and level of health care an ill or injured person wishes to receive when they are no longer able to make decisions or indicate their wishes themselves. Advance care planning involves appointing a substitute decision-maker and completing an ACD, which will guide your family and doctors to make decisions that align with your values and preferences.

Why is it important?

As difficult as it may be, it is important for all of us to talk about the last stages of life and what our preferences are for treatment and care at any stage. But it becomes particularly important for those who are providing care. You need to know information such as what specific treatment the person wants, where they want to be, who they want around them and who will speak on their behalf if they are unable to speak for themselves. If this planning is done well and communicated to all involved (family members, GP, palliative care nurses, aged-care staff, etc.), unnecessary treatments and hospital visits can be avoided and the person can be confident that their final wishes will be respected.

When do I access it?

Advance care planning is a good idea for older, frail people and those who have a chronic illness, multiple diseases, an early cognitive impairment or are approaching the last stages of their life. But anyone can put an ACD in place, even if they are not elderly or ill. Planning ahead gives the person, their family and those caring for them peace of mind.

How do I access it?

The documentation and requirements for recording these wishes and appointing a proxy decision-maker differ in each state and territory. Visit Advanced Care Planning Australia (ACPA) at advancecareplanning.org.au for more information and access to the relevant forms. You can also call the ACPA national advisory service on 1300 208 582 with any questions.

MyValues is a set of specially constructed statements designed to help you identify, consider and communicate your wishes about the medical treatment you would want in the later stages of life. It enables you to create a free online profile – explaining your values in relation to life, death and medical intervention – that you can share with your family and doctors. MyValues is a Victorian Government-supported initiative.

Practical help

What is it?

Caring for someone who is in the final stages of life is hard work – both emotionally and physically. As their health steadily declines and they become increasingly dependent on others, the person will require constant care by their informal ‘inner circle’ (primary person caring, partners, children, family, friends, etc.), as well as their formal ‘outer circle’ (GP, health and community services, palliative care, Violet Guides, etc.).

As well as tending to the needs of the person you are caring for, you may also need help with the many day-to-day tasks of running a household. Whether you have been caring for someone for a long period of time or have been thrust into the caring role quite suddenly, it is useful to know about the broad range of practical services designed to support you. These include but are not limited to:

  • Palliative care –  a multidisciplinary healthcare approach that improves the quality of life of patients and their families facing a life-threatening illness, through the prevention and relief of suffering and the treatment of pain and other physical, psychosocial and spiritual problems
  • Respite care – home, community or centre-based services that provide care so that primary caregivers can take a break
  • Transport services – assistance transporting patients to the doctor, hospital or other locations in suitably equipped vehicles; some require payment, while others are free of charge
  • Community nursing – comprehensive nursing care (health assessment, wound management, palliative care, continence care and stomal therapy) provided at clinics in community health centres or in the client’s home. A referral from your GP is required to access these services
  • Equipment – specialised equipment or aids to help you care at home; talk to your GP or local health service about how to access these. Some disease-specific organisations also loan or hire equipment
  • Financial support – one-off or ongoing government-funded financial assistance (such as the Carer Payment and Carer Allowance) for people who provide daily care to someone who has an illness, disability or is ‘frail aged’. The Commonwealth Government’s Department of Human Services also offers financial support for medical equipment and incontinence products (see humanservices.gov.au for details)
  • Work and study assistance – information and resources for people who are trying to balance caring with work and study. See the Carer Gateway

There are a number of online platforms that offer help with particular tasks and aspects of the caring role or even with help around the house:

  • BetterHelp  – private and affordable counselling from licensed, professional therapists
  • Better Caring – local care and support workers available for hire for people who are ageing or those who have a disability
  • Hireup– disability support workers available for hire

Airtasker

 – people you can hire for home and office tasks, from handyman services and garden maintenance to pick-up and deliveries

Respite care 

Respite care gives you and the person who is seriously ill a break and may relieve some of the stress associated with caring. It can give you time to do everyday activities or just rest and recharge so that you can continue to care for your loved one at home. Respite care can be provided informally by family or friends or formally by a respite service. Some people may choose respite at home, while others prefer community or centre-based services. Short breaks – a few hours or part of a day – are offered by in-home respite and day centres. Longer-term breaks – a full day, overnight, a weekend or a few weeks – are offered by day centres, overnight cottages or residential aged-care homes.

Why is it important?

The day-to-day work of caring can be challenging if you don’t ask for help and share it with others. It can also take up valuable time that could be spent making the most of those final months, weeks and days with the person you are caring for. The more you share the practical work, the more space you will create for the precious moments of connection with your loved one. Being well supported can completely change your experience of caring.

When do I access it?

It’s a good idea to start building your Circle of Care as soon as you make the decision to care for someone in the last stages of life, whether at home or elsewhere. This group of people will be your support team, helping you every step of the way.

You can arrange respite and other services as and when you need them. At times – such as when you are feeling emotionally vulnerable, stressed or exhausted – you may need additional support or to take a break from caring.

How do I access it?

For more information on the different types of respite services that are available, who is eligible and how to get the most out of respite, visit the Australian Government’s Carer Gateway at carergateway.gov.au or call 1800 422 737.

A network of Commonwealth Respite and Carelink Centres (CRCCS) has been established around Australia. These centres can assist carers to take a break through short-term and emergency respite services. They can also provide advice on, and coordinate access to, a range of services in your local area. You can contact your nearest CRCC 24 hours a day, seven days a week on 1800 052 222 (1800 059 059 outside business hours).

Our Circle of Care model may also assist you with coordinating the help of others.

Emotional support

 

What is it?

The emotional demands and stresses of caring for someone in the last stages of life can be high. Shock, anger, anxiety confusion, loneliness, grief, guilt and fear are all common reactions and it is important to find ways to cope with these powerful emotions that are right for you.

Being able to talk honestly about how you are feeling is a good start. Often it can help to have these conversations with someone who is close to you – the person you are caring for, a family member or friend – while sometimes it’s easier to confide in someone who is not directly involved in the situation. If you are uncomfortable talking about your emotions or are struggling to make sense of what is happening, then your GP, a counsellor or a Violet Guide are among those you can turn to for support.

Taking regular breaks is another way that you can look after yourself, both physically and emotionally. As well as calling on the people around you to help with the practical work of caring, respite services can let you have time out to rest and recharge.

Why is it important?

Caring for someone in the last stages of life can take its toll on your health and wellbeing, especially if you are caring for the person over a long period of time. Taking the time to manage your emotional needs can:

  • Reduce stress
  • Give you greater confidence and clarity
  • Build your emotional resilience and coping skills
  • Assist you in dealing with challenging behaviours and situations
  • Help you manage your relationships, including with person you are caring for
  • Allow you to continue in your caring role for as long as possible

 

When do I access it?

You can seek support at any time and it can be ongoing or only when you feel you need it. Remember that asking for help can ease some of the difficulties you might face while caring. Talking to someone in the early stages of caring can help you understand the situation you are facing and assist you to prepare and plan for what lies ahead.

How do I access it?

To speak with a Violet guide, make a booking. Or join our community of people who have experience caring for someone in the last stages of life and can help guide you through this process.

There are many counselling services available, both paid-for and cost-free. To find one that suits you, ask your friends, family, colleagues or clinical contacts, or try the services below. Support groups, also listed below, are another good source of help and advice for caregivers in many different situations (parents, children, disease-specific, culturally and linguistically diverse, etc.); they meet in person, by phone or online.

You can also contact the following:

And your state or territory Cancer Council:

NSW – Cancer Council New South Wales

VIC – Cancer Council Victoria

QLD – Cancer Council Queensland

SA – Cancer Council South Australia

WA – Cancer Council Western Australia

TAS – Cancer Council Tasmania

ACT – Cancer Council Australian Capital Territory

NT – Cancer Council Northern Territory

Condition specific organisations

What is it?

There are many organisations whose purpose is to support sufferers of a particular disease, their families and those who provide care. These organisations are a good place to start looking for information and support services for brain and other injuries, as well as cancer (breast, prostate, ovarian, paediatric, etc.), stroke, cystic fibrosis, motor neurone disease, asbestos-related illnesses and more.

Why is it important?

These organisations can provide specialist information and support that can assist you when caring for someone with a life-limiting injury or disease. The staff and volunteers who run these organisations may well have been in very similar situations to the one you now face and can help you understand the challenges that are particular to the condition of the person you are caring for, rather than providing general assistance. Some of these organisations have online discussion groups that may be able to offer advice and support.

When do I access it?

As soon as you receive a diagnosis or prognosis, you can start gathering information and resources that relate to the specific injury or disease affecting your loved one. As the person’s health deteriorates, you may need extra support or to supplement care with a palliative care service.

How do I access it?

If the person who is ill or injured has been admitted to a hospital, the staff will be able to provide information and referrals to support services. The following links cover some injuries and diseases; for others not included here, talk to your GP or do an online search. Carers Australiacan also refer you to disability- or illness-specific organisations.

Aged care

What is it?

A residential aged-care home, also known as a nursing home, offers accommodation and 24-hour personal and health care for an elderly person who is no longer able to live independently in their own home. These facilities – both government-funded and private – can be utilised on a permanent or short-term (respite) basis and provide various levels of care (see myagedcare.gov.au for a list of the services and care that must be provided in a government-approved facility). Younger people with a disability, dementia or other special care needs may also live in an aged-care home.

Why is it important?

When considering moving a person in the last stages of life into an aged-care home or assisted-living community – from an acute hospital or their own home – it is important to check (prior to admission) whether the facility is equipped to provide the appropriate level of care and support when the person’s health declines. If the facility cannot provide this care or fulfil the person’s final wishes (as stated in an advance care directive), other arrangements will need to be made. This may include caring for your loved one in your home, admitting them to a hospice, keeping them in hospital or arranging palliative care to be delivered in the aged-care facility.

When do I access it?

A frail, older person may decide to move into a residential aged-care facility when they can no longer live in their own home without assistance or when their family needs help caring for them in the last stages of life. They may also enter an aged-care home after a hospital admission, either permanently or for a short time (this is known as residential respite care).

How do I access it?

To find out if the person you are caring for is eligible for entry to a residential aged-care home that is subsidised by the Australian Government, you will need a free assessment by an Aged Care Assessment Team (ACAT, or ACAS in Victoria). Visit myagedcare.gov.au or call My Aged Care on 1800 200 422. You can also do an online search for private aged-care facilities or retirement villages in your local area or ask your GP for advice.

Palliative Care

What is it?

Palliative care is specialist, multidisciplinary health care that seeks to maximise the quality of life and comfort for people with a progressive and life-limiting illness. It aims to alleviate pain and suffering and to integrate medical with spiritual, emotional and psychological aspects of care for the person and their family.

Palliative care can be provided in private or public hospitals, hospices, residential aged-care facilities and a person’s home by a number of different health professionals who often work together in teams. These include:

  • Specialist palliative care doctors and nurses
  • General practitioners (GPs)
  • Allied health professionals such as pharmacists, occupational therapists, physiotherapists, speech pathologists and dieticians
  • Social workers
  • Grief and bereavement counsellors
  • Pastoral care workers
  • Volunteers

 

Why is it important?

Palliative care can greatly improve a person’s experience in the last stages of life. It can also offer families and those who are caring vital emotional and practical support. The World Health Organization’s definition states that palliative care:

  • Provides relief from pain and other distressing symptoms
  • Affirms life and regards dying as a normal process
  • Intends neither to hasten nor postpone death
  • Integrates psychological and spiritual aspects of palliative care
  • Offers a support system to help patients live as actively as possible until death
  • Offers a support system to help the family cope during the patient’s illness and in bereavement
  • Uses a team approach to address the needs of patients and their families, including bereavement counselling if indicated
  • Will enhance the quality of life and may also positively influence the course of illness
  • Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications

 

When do I access it?

Palliative care may begin at any time following a diagnosis – it’s never too soon to make contact with your local service. Early, and even late, the involvement of the palliative care team is strongly recommended. In fact, research tells us that palliative care enhances and, in some cases, prolongs life.

If the person you are caring for is in the hospital and you’re planning to bring them home, it is important that a referral is made to the local palliative care service before they are discharged; this can be done by either the hospital doctor or the person’s GP. Community palliative care services can provide support through home visits. If the person you are caring for is well enough to get around on their own, they may also visit specialist palliative care clinics as an outpatient.

How do I access it?

Ask your GP, the hospital doctor or a member of the hospital’s multidisciplinary team (nurse, social worker, etc.) for more information on how to access palliative care services. Palliative Care Australia (PCA), the national peak body for palliative care, provides information and resources (including online training) for carers, families and those receiving palliative care throughout Australia. Go to palliativecare.org.au or call (02) 6232 0700 – support is also available after hours on 1800 548 225. A directory of services can be found on the website of the PCA member organisation in your state or territory:

NSW – Palliative Care NSW

SA – Palliative Care South Australia

QLD – Palliative Care Queensland

VIC – Palliative Care Victoria

WA – Palliative Care WA

TAS – Palliative Care Tasmania

ACT – Palliative Care ACT

NT – Palliative Care Northern Territory

    • (08) 8951 6762
    • sclyne@hotmail.com

 

Other helpful resources

What is it?

Our work over the past 30 years has taught us that being well informed, prepared and supported while caring can lead to better decisions and outcomes, not only for those in the last stages of life but also their family, loved ones ­­and you – the person who has embarked on this remarkable journey of care.

We have tried to make locating and accessing the tools, resources and services that are available to you as easy as possible. From palliative care, emotional support and practical help to advance care planning, specific diseases and aged care, there is a wealth of information on this site. If you don’t find what you’re looking for here, our Violet guides or community may be able to answer your questions or point you in the right direction. You may also find these general resources helpful.

 
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