As you get older, your health and how well you are able to take care of yourself will change. The changes to the support you may need can affect you, your family and support networks as you move through this stage of life.
While this change can sometimes be planned, a sudden change in your health can happen. Knowing what to expect, the supports that are available for you, and things to consider when planning for your future are important. This information can help you and your support network to identify and put into place options that are right for you and help ensure you receive the best care.
Both aged care and palliative care aim to provide care that is person-centred. Care is tailored to what you want and/or need, considering each individual and/or their families.
Aged care services help support eligible people over 65 with their needs and everyday living. There are many different types of supports and services, which can include, for example:
The Australian government subsidises aged care services provided in the home, within the community and in residential aged care homes. To access these subsidised aged care services, you will need to be assessed to see whether you are eligible. My Aged Care is a free government service that will help you explore options for getting assessed and accessing services that suit your situation.
Palliative care is provided by health professionals to people living with a life-limiting illness, regardless of how old they are. People have the right to receive palliative care when they need it. The focus is on effectively managing symptoms, promoting quality of life and understanding what is important to the person and their preferences.
Palliative care does not necessarily provide day-to-day care in people’s homes in the same way that other aged care services and supports can. This means that some aged care services and supports are useful to have alongside any palliative care you may receive.
The ‘Older Australia’ section of the CareSearch website provides more information about getting older, aged care, planning and end of life.
There are supports available to help you stay at home and remain as independent as possible, if this is a safe option for you. This would be a time to think about what is changing and what support would be useful for you. There are people who can help you navigate these options and considerations.
Talk to your family or support people about what is happening. It would also be good to speak to your GP about your changing health needs, your wish to keep living at home for as long as possible and any concerns you may have.
If you haven’t already done so, visit My Aged Care to see whether you are eligible for services and supports and to have an assessment done. This is one of the first steps to access government-funded aged care supports and services.
If you are new to aged care, there is a lot of information to go through. Remember to pace yourself. There is likely going to be a few steps before you have the right services and supports in place for you.
The My Aged Care website has a page that explains the support that is available in a home setting and who is eligible.
Residential aged care is available if you require this type of care or are unable to live independently or at home anymore. There are many different reasons why this might be the case. For example, over time, an older person may face different challenges, from moving around, incontinence, memory and thinking, to other behaviours that can be difficult to manage at home.
Accommodation in an aged care home can be something you have been expecting and planning towards for a while. For example, you may have multiple health conditions and more care needs that can make it more difficult to live at home independently. They might be more than what your support people or home care services can offer. It would be good to speak with your GP to discuss your health needs to figure out what the next steps are in your case. My Aged Care is also the go-to point for information on finding out about a range of aged care services that are government-funded and how you can access them.
For yourself or others, residential aged care can be quite a sudden or unexpected thing to think about. When your health has suddenly declined or you have been recently hospitalised, this may mean aged care accommodation becomes a better option for you in the short or long term. You may want to ask the hospital about steps to enable this transition.
When it is time to look for an aged care home, you can consider the options available in your area and compare the services and the approach to care that the different homes offer. The ‘Find a provider’ tool on the My Aged Care website can help you with this. Aged care homes may also offer tours of the home and more information on their websites.
A series of leaflets are available in different languages that can help you consider what to ask when looking for an aged care home or comparing between similar aged care homes.
As a carer, it is important to take time to look after yourself and see what supports you and the person you are caring for can access. Caring for someone can be stressful and overwhelming at times. It is okay to seek support and help.
Carer Gateway offers specific supports and services for carers, ranging from a conversation over the phone, counselling, peer support groups, to support packages and access to emergency respite. You may also be eligible to access financial support for carers. Short-term care options like respite care are also available. This is where someone else looks after your caring responsibilities temporarily to give you the chance to have a break and take care of yourself.
Practical tips are available for carers on topics like aspects around the home, transport/travel, managing health and behaviour, and emergencies. If you haven’t already started, writing things down and keeping a folder for relevant paperwork can be helpful to start connecting all the points. There are many helpful resources on the Carer Gateway website, such as the emergency care plan that can help you and your family member plan for emergencies and the future together.
Having more supports in place for the person you are caring for can help you manage all the things you are doing. My Aged Care has information on services that they may be eligible to access. If your family member already receives supports and services via the Commonwealth Home Support Programme or a Home Care Package, it might be worth thinking about whether the current level of support or package is enough. It might be time for a reassessment.
Visit My Aged Care to learn more about the type of supports available and how they can be accessed. Different levels and types of supports are available for people over 65 and their families.
Emergency Care Plan | Carer Gateway
You can download a copy of an Emergency Care Plan to complete from the Carer Gateway website.
Being confident that the person you have been caring for is receiving good care in an aged care home can give you peace of mind.
While homes should meet the same standards and commit to providing quality care, knowing that there are positive policies in place within the aged care home can assure you of the standard of care being provided and the aged care home’s approach to care.
You will feel confident if you see their day-to-day care needs are being met. The person’s care needs should also be monitored and regularly reviewed by the care staff of the home and their GP. This is particularly important if there is a sudden change to their health or care needs. Good care ensures that these changes are identified quickly, assessed and responded to appropriately so that the care approach can be tailored for the person.
In many ways, your carer role changes when someone moves into an aged care home. Many care needs now rest with the aged care home staff and health team instead. Good communication becomes essential. Asking questions and communicating with the care team within the aged care home can keep communication lines open and help you get feedback. Family meetings are also a great opportunity to do this. You can also ask the aged care home if they have ways of keeping in touch with you about the person’s wellbeing, such as via an app like CareApp.
Talking regularly with the person means you can hear firsthand about their experience and the care that they are receiving in the aged care home. Ask them about how they are finding the home and whether there is anything that they need or are worried about. In-person visits will also give you a real time perspective on their lifestyle and how they are being cared for.
Tips from other carers can be useful to help you engage with the aged care home team.
To find out more about the quality of the aged care home, 10 Questions to Ask can help you think about what you might like to ask.
Moving from home to an aged care home (residential aged care) can be a challenging time. If you have been caring for the person at home, how you care for them going forward is likely to change. You may have mixed thoughts and emotions. You may feel guilty about ‘abandoning’ them, be concerned about whether they will be well looked after and worried about whether they will have a happy and fulfilling lifestyle there. You are not alone in having these thoughts and feelings. Having your family member in residential aged care does not mean you have abandoned them, that you are less of a carer or that you have not fulfilled your responsibilities.
You may be worried about the effect that changes to their routines and habits will have, and whether they will feel isolated being away from family or friends. Some of these ‘fears of the unknown’ or preconceptions may settle or change once they have moved. You may want to speak with your family member to see how they are finding life in the aged care home.
For both of you, the experiences you will have with the aged care home with time may help you realise that the move and what it means may not be as daunting as you first thought. Try to keep in touch with them and have conversations to see what can help both of you adjust to this new care setting. You are still a part of the team, along with the aged care staff and health professionals who look after your family member in the aged care home.
You can reach out to Carer Gateway if you need support in working through your thoughts and feelings. They offer free counselling for carers as well as many other free supports and services. You can contact them via 1800 422 737, Monday to Friday, 08:00 am to 05:00 pm.
This page on the My Aged Care website shares tips on how to continue your carer role when someone is in an aged care home.
Once a life-limiting illness is diagnosed, planning for what is to come becomes very important. This is the time for you and the person you are caring for to talk about what care will look like and to prepare, if you haven’t already done so.
Understanding what the care needs are and what is important to the person is essential to appropriate care. The team looking after their health and wellbeing will work with the person to develop a care plan and goals of care to support them as their needs change. This is also an appropriate time to ask about whether specialist palliative care is needed.
Being diagnosed with a life-limiting illness can prompt the person you are caring for to think about what they want. This is an important conversation to have with them. Advance care planning allows them to express their wishes for the care they receive at the end of their life. This is especially important to know for the time when they might not be able to communicate them. There are resources that can help support advance care planning. SA Health have a website for creating Advance Care Directives | SA Health.
As well as your health care team, you can speak with a Palliative Care Navigator by calling 1-800-725-548 (PALLI8), Monday to Friday from 08:30 am to 04:00 pm.
If you know someone who is dying, this pathway may be helpful.
Many people wish to die at home. Having these conversations early on can give you time to complete advance care planning. It will also allow for the person’s wishes to be documented and actioned when the time comes. The end of life is likely going to be different at home compared to an aged care home. It is important that an informed choice and appropriate plan is made. Different supports may be on hand, such as equipment or ready access to health professionals who can quickly respond. Being at home in a more familiar place with your support people may be a priority.
It is important to speak with the health care team regardless of whether the person you are caring for is living at home or in an aged care home. It may be possible, with the right supports, to plan (for you or the person you are caring for) to die at home. There may also be paperwork required to make sure that documents and plans are in place. For example, it is important for the person to organise any legal paperwork and formalise plans. These include things such as their will, power of attorney and enduring guardianship, and an advance care plan / directive so that everyone involved in their care understands their wishes. If preparing for a death at home, you can also find out more about what to do once the person has died, such as who to call to certify the death and next steps.
However, sometimes due to the complexity of care needs, the lack of support or availability of equipment, or medical emergencies and unexpected circumstances, a person may not be able to die in the place that they wish. Sometimes, people’s care needs are more than what is sustainable for families at home, for example if someone has 24-hour care. Aged care homes are well equipped to care for residents and their families at the end of life. Many people are supported to live their lives and to die in aged care homes with care, support, and dignity provided by the staff and people who care for them.
healthdirect Australia provides answers to questions relating to death at home and what to prepare for.
CarerHelp
CarerHelp has useful resources for carers of people with a life-limiting illness.
Call 1-800-725-548 (PALLI8), Monday to Friday from 08:30 am to 04:00 pm. You can request a call back by filling out our call back form.
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