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Caring for someone with Parkinson’s

The impact of Parkinson’s goes beyond the person who has been diagnosed with Parkinson’s. Partners, family members and friends of the person who has been diagnosed with Parkinson’s will be well aware of how challenging the condition can be for them and those closest to them.

A carer is a person who provides unpaid care and support for someone living with Parkinson’s. Carers may be partners, relatives, friends or neighbours. 

People become carers for various different reasons. Many people become carers because they want to help a relative, friend or loved one. They might see it as a natural extension of their current relationship. Many carers feel that it is what they should do. For this reason, some people are reluctant to identify themselves as a carer.

The role of the carer is a very important one. It can be a very rewarding, but is also a challenging role.

This section covers:

The role of a carer

As Parkinson’s progresses gradually over many years, it is common for people to take on a caring role gradually. 

When it comes to Parkinson’s, each carer has a unique role. In the early years of Parkinson’s, a carer may not be needed for practical activities. However, providing emotional support is very important in these early years. 

As symptoms change over time, so does the carer’s role. Over the years carers might help with everyday activities such as showering, dressing, eating, and toileting. Carers may also provide assistance with banking, shopping and housework. 

In the case of Parkinson’s, carers also play an important role in assisting with medications. In addition to these practical activities, carers also provide ongoing encouragement and reassurance.

Financial support for carers

Everyone’s financial situation is different. If you are a carer of a person with Parkinson’s and have concerns about money, you may be entitled to claim Government benefits that could reduce the financial stress. To determine if you are eligible for Government payments, contact Centrelink  on 132 717 or visit their website.

Some of the Government benefits available to carers are:

  • Carer Payment
    Provides financial support to people who are unable to work in substantial paid employment because they provide full time daily care to someone with a severe disability or medical condition, or to someone who is frail aged.
  • Carer Allowance
    A supplementary payment for parents or carers providing additional daily care to an adult or dependent child with a disability or medical condition, or to someone who is frail aged. Carer Allowance is free of the income and assets test, is not taxable and can be paid in addition to wages, Carer Payment or any other Centrelink payment.

Look after yourself

The role of a carer can be very busy and demanding at times, leaving little chance to take time out or look after your own needs. However, it is very important that you do find opportunities to look after yourself.

Recognising your own needs will help you balance caring with the rest of your life. By making an effort to look after your own health and well-being, it will benefit both you and the person living with Parkinson’s. It helps to ensure that you are in the best state to provide care.

Maintain your own health and well-being

It is important that you remain healthy and maintain your own well-being, in order to provide the best care possible. Below are useful tips to help maintain your own health and well-being.

Managing stress

  • Learn as much as you can about Parkinson’s
  • Maintain good sleeping habits
  • Eat healthy and exercise regularly
  • Find out what relaxes you and take time out to recharge
  • Learn some relaxation techniques
  • Talk with family, friends and other carers about how you feel
  • Learn to identify the situations that cause stress and work out ways to best manage those situations
  • Make small changes that may lower your stress, such as asking family or friends for help
  • Accept what you can’t change, and focus on what you can do to help
  • Identify your own strengths and weaknesses. Take pride in the things you do well and seek help where you need it 

Eating healthy

  • Choose a well-balanced diet that includes foods from all of the major food groups. Eating healthy is about balance and moderation
  • Avoid eating foods that contain high amounts of sugar, salt and fat; eat these foods in moderation only
  • Drink plenty of water
  • Keep your pantry and fridge well stocked so that healthy foods are always at hand

Exercise regularly

  • Talk to your doctor if you are worried about pre-existing conditions that might affect your ability to exercise
  • Look for opportunities to add exercise into your everyday activities. Known as incidental exercise, this could include walking to the shops, taking the stairs instead of a lift and working in the garden
  • Begin with small amounts of easy exercise; as your fitness improves, slowly increase the time and intensity of exercise you undertake
  • Participate in exercise that you enjoy
  • Set achievable goals for yourself to maintain motivation 
  • Join an exercise group or class as it’s a great way to maintain motivation and to make friends

Take time out

It can be very difficult to sustain the demands of caring without taking regular breaks. Having a break can be good for both you and the person you are caring for. This is often called respite.

There are many different types of respite available. The type of respite most suitable for you will be dependent on your own situation. Respite can take place in your home, an aged care facility or a community centre. 

For more information about respite services in your area please call the Commonwealth Respite and Carelink Centre on 1800 052 222.

Support for you

Sometimes carers can feel isolated, and are not sure where to turn for support. It can be helpful to talk things over with someone else.

Peer support

  • Parkinson’s Peer Support Groups are suitable for both people with Parkinson’s and their carers. They offer information, social connection, hope and support and are a good way to meet and talk with other people who are living with the challenges of Parkinson’s
  • Call Fight Parkinson’s on 1800 644 189 for details of your local group
  • Carers Victoria also has various peer support groups throughout Victoria. Call 1800 242 636 to find about carers support groups in your area

Counselling and advice

  • Caring for someone living with Parkinson’s can sometimes bring up difficult emotions. Talking to a counsellor can help you to learn ways of coping better with the challenges of the caring role
  • Carers Victoria has a free counselling service. Call 1800 242 636 to arrange a referral
  • Call Fight Parkinson’s Health Team on 1800 644 189 to confidentially discuss the challenges you are facing. They can also advise on other counselling services in your area