Planning for the future

11 minute read

If you care for someone with a long-term illness or disability, things are likely to change over time. The person might need more care in the future, or you might not be able to keep caring for them.

It’s important to plan for the future to make it easier to cope with change. You can talk with the person you care for about what might change, so you can make decisions together. You can talk with health care providers and other services to see how they can help.

Our self-guided coaching sessions can lead you through what you might need to know to plan ahead, and our online carer forum connects you with other carers in the same situation. The New South Wales Government has developed Planning Ahead Tools to help you figure out what you need to do.

Family meetings

Family meetings can help you plan for the future. In a family meeting, you can share information and worries with everyone involved in the care of a person. A meeting can help you to work out what’s best for everyone.

You should have a family meeting to make decisions, pass on news or get support, or whenever you think it's important. If you are making plans for the future, you might need more than one family meeting to work things out, or you might want to arrange regular meetings.

How to run a family meeting

Meetings can include people from outside the family, such as doctors, health workers, friends and others you think are important.

Group communication works best if someone is in charge – this person is known as the chair. The chair makes sure that everyone gets an equal chance to speak. You might be the chair, or it might be someone else who the family respects.

It’s a good idea to get someone to take notes at the meeting, so it is clear what has been talked about and decided. You can send the notes to anyone who might need to know about your plans.

Getting help with family meetings

Sometimes, problems and conflicts can come up in family meetings. You might want to ask a mediator to come along. A mediator is someone who is not involved in the problem, who can help people to talk and agree. You can ask someone outside the family (for example, a family friend or neighbour) to act as a mediator, or you can call Family Relationships Online on 1800 050 321 to arrange one.

Planning for a long-term condition

As a carer, you are probably caring for someone who will need care for a long time.

Most people who need care have a condition that will last for a long time or all their life (known as a chronic condition), or a condition that will eventually cause their death (known as a terminal illness).

How to plan for a long term condition

Understanding what might happen in the future will help you to plan. You may also want to think about the different stages you might go through in your caring role.

You should find out as much as you can about the illness or condition affecting the person you care for and what to expect. Talk with your doctor and other health professionals. Don’t be afraid to ask questions or to ask for more details. You can ask:

  • What should we expect? How will the person’s illness change over time?
  • What lifestyle changes will we need to make?
  • What are the treatment options?
  • Where will the person be treated?
  • Should we see other health professionals, such as specialists, physiotherapists or social workers?
  • What other services and support are available?

Managing long-term conditions becomes part of everyday life. With good care, many people with long-term conditions can live active and fulfilling lives. As a carer, you can look for opportunities for the person you care for to be involved in fun, social or educational activities.

If you are caring for someone with disability, they can get support from the National Disability Insurance Scheme (NDIS). Visit the NDIS website to see what support is available. If you need help with using the NDIS system, the Carers Australia website has lots of useful information and a carer checklist to help you through the process.

Getting help as things change

Many long-term conditions will get worse over time. They may cause more pain or disability, or more mental health problems.

Your doctor can help with planning. Government and community organisations can also help with planning, support and costs. If the person you care for can’t manage their own affairs anymore, you may need legal advice.

If the person you care for has disability, the Planning for the future: people with disability booklet can help you to plan for the future. It has information about things you need to think about and your legal and financial options.

As their condition progresses, the person’s needs might change. They might need special aids and equipment, or extra nursing care or home help. They may also need to move into residential care. If they may die soon, you could use palliative care. Palliative care can help to improve a dying person’s quality of life.

Caring for a child becoming an adult

If you care for a child, both you and the person you care for will face new issues as they grow up and become more independent. Good planning from their early teenage years will help you to manage these challenges.

What might change as they get older

If you are caring for a young adult, you might have new worries and concerns as they grow older. The person:

  • might do risky things that could affect their health
  • might not want to be involved with health services
  • might not be interested in looking after their own health
  • might start to develop sexual feelings
  • might have new emotional and social needs and hopes
  • might want to form new relationships with others

It can be hard to talk about these issues with the young adult you care for. But it is important so they can grow up into a responsible, independent adult.

Your role might also change as the person you care for grows up. It will become less about organising services for them and more about giving them emotional support and guidance. You might still need to coordinate care for the young person until they can do it themselves.

It is important for young people to learn how to care for themselves. From the age of about 16, your child may want to start looking after themselves and spend more time alone with health professionals and other service providers. You will probably still be involved and can help them to think through their decisions.

What might happen when they leave school

The person you care for will need to decide what they want to do when they leave school. Some options include:

The Australian Government National Disability Coordination Officer Program helps people with a disability to get further education and employment.

The young person may be able to live independently with some help from you or with other support. The National Disability Insurance Scheme (NDIS) may be able to help you to get supported accommodation.

How to plan for a child becoming an adult

If the child you care for will continue to live with you when they are an adult, you should consider what will happen to them when you are too old to look after them. You will need to think about financial planning, wills and trusts to make sure they are provided for.

Young people have the legal right to make decisions about their care when they turn 18. But the person must be competent, or able to understand and make decisions about their care. If the person you care for is not likely to be legally competent in the long term, you will need to think about arranging guardianship and power of attorney.

Advance care planning

Advance care planning means talking to the person you care for about what care and health services they want in the future, if their condition gets worse. This planning means that their wishes can be followed even if they become too sick to make decisions or tell you what they want.

What is advance care planning

Advance care planning involves:

  • appointing someone else to make decisions for the person you care for – this can be you or another trusted family member or friend
  • completing an Advance (Health or Care) Directive – this is a formal written record of what the person wants in future treatment. The person must be able to make decisions at the time the directive is made

How to make an advance care plan

To make an advance care plan, you should first talk with the person you care for about what they want in the future. The Advance Care Planning Australia website can guide you through what to think and talk about.

You should then write down what the person wants. These instructions are known as an advance care directive, or living will.

These written instructions are the main part of an advance care plan. However, each Australian state and territory has different rules about what documents are needed in an advance care plan. The Advance Care Planning Australia website has information about what you will need to do in your state or territory.

When the person you care for has made an advance care plan, you should let others in your family and health care team know about the plan and where copies are kept.

Your changing role

As a carer, you will probably experience different stages in your caring role.

As time passes, you might not be able to help the person you care for as much as you do now. That could be because of work, financial pressures, your health or family situation, or other reasons.

What might change with your role

It’s important to start thinking about what changes might take place. Think ahead and ask yourself these questions. If things change:

  • Who will care for the person I now care for? Do I have a back-up carer, and could they become the full-time carer?
  • Where will the person live? Will they stay in their current home, move in with another family member, or get residential care?

Getting help with your changing role

You can talk with the person you care for, to ask what they would like. You can talk with your family and doctor about the options available. You might also want to talk through the options with other carers on our online forum.

You can put things in place to make it easier to make changes over time. For example, you might want to choose someone else to have guardianship or power of attorney for the person you care for, and start to organise that.

If you can’t provide care any more

For whatever reason, at some time you might not be able to continue to look after the person you care for.

If that happens, you have 2 main choices.

You can get help with care in your home

Many organisations have services that provide care in your home. Home care workers can help with all aspects of care, including washing, dressing, moving and meals. Workers might come to your home every day, or they can live with you.

Home care will allow you and the person you care for to stay in your home. However, sometimes the person might need more care than can be provided at home. Then you will need to think about moving them to live somewhere else.

You can move the person to a residential facility

There are several other places the person you care for could live, depending on their condition:

  • If you are looking after an elderly person, you can think about moving them to an aged care home
  • If you are looking after someone with disability or a mental illness, there may be care homes or group homes available
  • If you are looking after someone who is reaching the end of their life, they may be more comfortable in a hospice

How to get help

Call Carer Gateway on 1800 422 737 to find out your options and talk about what would be the best for you and the person you care for.

You may be able to get free or subsidised (cheaper for you) services, or you may want to pay to get a specific service.

You may also be able to get help through My Aged Care if you are looking after an elderly person (call 1800 200 422), or the National Disability Insurance Scheme (NDIS), if you are looking after someone with disability (call 1800 800 110).

It’s a good idea to start thinking early about what you will do when you can no longer care, because it can take time to organise services or a place to stay.

Life after caring

At some time, your role as a carer might end. This might be when the person you care for recovers, when they die, or when they leave your care and other people take over the caring role. You may have to adjust to changes and ‘rebuild’ your life when you are no longer a carer.

What to expect when your caring role ends

You might feel intense loss, guilt and sadness. You might also feel worried about the future. This is a natural reaction. Grief has no timeline. Grieving can continue for some time, even for many years.

Some people find that physical and emotional exhaustion catches up with them and they might feel ill or very tired for a while.

Carers Australia has associations in each state and territory that can help you when your caring role ends.

If you need help with using the NDIS system, the Carers Australia website has lots of useful information and a carer checklist [PDF 1.1 MB] to help you through the process.

What to do when you are no longer a carer

The time will come when you are ready to think about what to do next.

Research shows that many carers give up activities and lose contact with friends and their community. Try to follow your interests, reconnect with family and friends, and make new friends.

You might also consider volunteering, learning something new or going back to work.

If you would like to go back to work, the Australian Government JobActive website has information to help you, including tips on job searching and applications. ParentsNext and Career Transition can help if you have not worked for a while.