Caring for Someone
The impact of Parkinson’s and Atypical Parkinson’s (PSP, MSA, CBS) extends further than just the person who has been diagnosed. The condition can be challenging to them, but also to those closest to them who may become their carers. A carer is a person who provides unpaid care and support for someone living with Parkinson’s or Atypical Parkinson’s. Carers may be partners, relatives, friends, or neighbours.
People become carers for different reasons. Many people become carers because they want to help, while others see it as a natural extension of their current relationship. Many carers feel that it is simply what they should do. For this reason, some people are reluctant to identify themselves as a carer. Whatever their reason is for becoming a carer, this role is a very important one, that can be very rewarding but also extremely challenging.
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As Parkinson’s progresses gradually over many years, it’s common for people to take on a caring role gradually. When it comes to Parkinson’s, each carer has a unique role. In the first stages of Parkinson’s, a carer might 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 might also help 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.
Living with Parkinson’s as it progresses is a fight. The fight is entwined in a belief that progress is possible. For people living with Parkinson’s, and their carers the fight is for recognition and validation, for independence and dignity.
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’s very important that you do find opportunities to take care of your own health and wellbeing. Looking after yourself is important - by recognising your own needs you’ll be better equipped to balance caring with the rest of your life and to be able to provide the best care possible.
- Focussing on the essentials for well-being – try to get enough sleep, eat well, and get some exercise wherever possible. Exploring relaxation tips and techniques and taking time out to recharge are also extremely important.
- Sustaining a healthy lifestyle – how well you fuel and care for your body will impact your capacity to provide care on an ongoing basis. Make healthy food choices wherever possible, keep hydrated, and look for opportunities to add exercise into your everyday activities.
- Managing stress – learning about the condition and developing your understanding of how it progresses can be incredibly empowering and should not be underestimated. It also helps to accept what you can’t change, focus on what you can do to help, and take pride in the things you do well.
- Getting support – Stress can also be alleviated through accessing the support you need from family and friends, in our community, or with a counsellor. It’s also important to reach out for help when (or before) you need it.
- Accessing respite care – It can be very difficult to sustain the demands of caring without taking regular breaks and having a break can be good for you both. This is called ‘respite care’ and a range of options are available depending on your location and situation. For more information about respite services in your area, you can call the Commonwealth Respite and Carelink Centre on 1800 052 222.
Sometimes carers can feel isolated and are not sure where to turn for support. Living with Parkinson’s or Atypical Parkinson’s (PSP, MSA, CBS) as it progresses is a fight. It can be helpful to talk things over with someone else. The foundation of Fight Parkinson’s lies in our collective support for one another to live full and active lives. No-one has to fight alone, including carers.
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 living with Parkinson’s.
One-on-one support is also important for carers, enabling them to deal privately with the difficult emotions experienced when caring for someone living with Parkinson’s. Talking to a counsellor can help you to find ways of coping better with the challenges of the caring role. Both Carers Victoria and Fight Parkinson’s offer free confidential telephone counselling information and support.
- Call the Fight Parkinson’s Information Line on 1800 644 189 for details of your local Peer Support Group, or to confidentially discuss the challenges you are facing with our Health Team. They can also advise on other counselling services in your area.
- Call Carers Victoria on 1800 514 845 to find about carers support groups in your area, or discuss counselling services or referrals, or find out more on the Carers Victoria website.
Everyone’s financial situation is different. If you’re a carer of a person with Parkinson’s or Atypical Parkinson’s (PSP, MSA, CBS) and have concerns about money, you may be entitled to claim Government benefits such as a carer payment, carer allowance, or carer supplement that could reduce financial stress. To determine if you are eligible for Government payments, call Services Australia’s Disability, Sickness and Carers line on 132 717 or visit their website for more information about Centrelink payments and services.