Carers play an important role in the care and support of someone with Parkinson’s.

Caring for someone with Parkinson’s can be a very long and difficult journey and everyone reacts quite differently to the challenge. Make sure you take time to look after yourself as much as possible.

FAQs

Carers are people who look after someone who needs help with their day-to-day living. Carers are often partners and family members but could also be colleagues, friends or neighbours. Many carers who live with a person with Parkinson’s will not view themselves as a ‘carer’. First and foremost, they will view themselves as a parent, wife, husband, son, daughter or partner.

Carers can be any age. Children and young adults (under 25 years of age) are called young carers. There are special groups and supports to assist young carers with the challenges they face. You do not need special medical training to assist someone living with Parkinson’s, though it is highly recommended that you seek professional help in the advanced stages. Most carers are asked to help with, or just take over, daily tasks that may become difficult to near impossible for someone with Parkinson’s. Carers may assist with making and keeping appointments, transport, cooking, cleaning, as well as provide ongoing emotional support, on the good and the bad days.

Communication is key to caring for anyone. A Parkinson’s journey includes a multidisciplinary team, so developing good relationships with all involved in their care is paramount. A few other tips that may be helpful to carers of people living with Parkinson’s:

  • Talk to each other and agree on care decisions and responsibilities in light of the diagnosis together to avoid miscommunication and resentment.
  • Have patience with the person with Parkinson’s, they experience slowness of movements, inability to find words at times, and tend to do ‘one thing at a time’.
  • Speak to the person with clear tone and timing. You do not need to speak louder (unless you are aware that they have a known hearing impairment).
  • Speak slowly enough for that person. Repeat their turn of phrase to also help them slow their speech down.
  • Provide time for them to participate in any conversations or respond to any questions. It is very important that you don’t fill in the spaces for them.
  • Encourage them to use single words or short word phrasing so their message is clearly conveyed.
  • Provide empathy – between word-finding, not being able to keep up with conversations and slow responses, communicating becomes difficult for a person living with Parkinson’s. It may leave them with a loss of confidence in addition to being frustrating and exhausting. However, it is very important they don’t disengage from social situations due to communication issues.
  • Where appropriate, try asking closed-ended questions where people with Parkinson’s can answer simple ‘yes and no’ answers, especially towards the end of the day.
  • Always acknowledge when you have understood their questions and communication (e.g. nodding your head and saying ‘thank you’).

You may come across other communication barriers. The person you are caring for is having Parkinson’s symptoms including loss of facial expression, word-finding and other cognitive changes. Some of these communication barriers and symptoms you may encounter are detailed on the Communication & Parkinson’s information sheet.

Parkinson’s is challenging for the person living with it. However, it can be just as challenging for a care partner. Grief and loss for what you thought your future together would look like to the reality of living with Parkinson’s. Carers can suffer from frustration and anger, depression and sleep disorders. If not properly looked after, they can experience carer burden. However, having the right supports in place for you and your person with Parkinson’s including sound information, a multidisciplinary care team, carer supports from government programs, help from family, friends, work colleagues and neighbours will help you on your journey.

Sometimes when Parkinson’s hits, you are at an age or stage when you are still:

  • caring for aging parents
  • caring while still working
  • caring for young children/grandchildren

With all that can be on your plate, the new demands on your time and energy, still try to do some things you enjoy. Find time for social activities, exercise or coffees with a friend. Maintaining your identity is important for your mental and physical well-being. You can do this. Make time to yourself, seek help from government programs and focus on your own health and wellbeing.

There are many carer supports available through including support groups, online training, counselling, breaks and respite care as well as financial supports if you are eligible.

CarerHelp

Carerhelp aims to empower carers to cope with the hard times as well as they can, and to make space for good times as well. When carers feel ready for their role, everybody benefits. Here are some of the key things carers can get from the Carerhelp website:

  • Access to high quality information and resources that support them in the carer role
  • Knowledge of the services available to carers
  • A greater sense of control over their role
  • Better communication with the health care team, family and friends
  • Greater well-being

Carer Gateway

Carer Gateway is an Australian Government program providing free services and support for carers. There is a wide range of help available from counselling to respite care. To find out what support and services are available, call 1800 422 737 or visit their website carergateway.gov.au

Carer Support Groups

A support group consists of people who get together to give and get support and assistance in coping with a common problem. They are not a substitute for medical advice, nor are they fund-raising groups. They are simply voluntary gatherings of people who share common situations and problems and who, by sharing their experiences, support and help each other. There are many online and face to face groups, so you should be able find one that suits you.

Young Carers

You can get information on whether there is a young carers group near you contacting Carers Australia or your state or territory carers organisation. Young carers also have the Young Carers Network and Young Carers bursary to help with costs of schooling.

Advanced Care Planning is where you share your beliefs, values and preferences with your loved ones and your health care team. If you are in a situation where you are unable to make decisions about your care, the Advanced Care Plan will guide those who are caring for you to make decisions about your treatment. It gives you control. There are several types of Powers of Attorney and Advanced Care Plans that can be put in place which vary depending on where you live. An enduring Power of Attorney is where you appoint someone to make financial and personal decisions on your behalf if you become unable to make your own decisions such as if you have failing cognitive health or lose capacity to make decisions through an illness.

Everyone regardless of age of health status should have an advanced care plan and an enduring power of attorney so that your wishes and preferences are respected and there is someone that can look after your affairs if you become unable to do so.

For more information visit advancecareplanning.org.au or click here to view the Department of Health information sheet for further details.

The Australian Healthcare and Hospitals Association have re-launched the Palliative Care Online Training Portal, funded by the Australian Government. The Portal provides free, non-clinical, interactive training to carers, community and aged care workers, students, volunteers, family members and clinicians who want to build their skills if they are caring for someone with a life-limiting illness.

To date this training has been delivered to over 35,000 people and covers topics such as:

  • the needs of people and their families as they approach end-of-life
  • assessment skills
  • end-of-life conversations
  • self-care and building resilience
  • pain management
  • recognising deteriorating patients.

The Palliative Care Online Training Portal is available at www.pallcaretraining.com.au

Registration is free and there are no time restrictions for completion of the modules.

Voluntary Assisted Dying (VAD) key facts from healthdirect.gov.au/voluntary-assisted-dying

Voluntary assisted dying (VAD) is when someone has medical assistance to end their life because they have an advanced medical condition that causes intolerable suffering.

  • Currently, VAD is available in Queensland, New South Wales, South Australia, Tasmania, Victoria and Western Australia.
  • Strict criteria govern who is eligible for VAD, but these criteria vary slightly from state to state.
  • If you have a terminal medical condition (a disease or illness that is likely to cause death soon, e.g. a Parkinson’s Plus condition) and are thinking about VAD, your doctor or health professional can give you more information.
  • To be eligible for VAD in most states, a medical condition must be expected to cause death within 6 months, or 12 months in the case of a neurodegenerative (progressive neurological) condition. In Queensland, the expected timeframe is 12 months for all medical conditions.

More information:

Be aware of these things as you are care-giving

  • Understand the challenges of Parkinson’s
  • Know when to/when not to help
  • Allow time for the person to do things for themselves, without rushing them
  • Don’t take over (e.g. do not speak for them or do things for them unless asked)
  • Know which health care professionals to go to for help
  • Adopt a day-by-day approach
  • Stay observant of any changes in symptoms
  • Be honest with yourself and others about the challenges you face and how you feel
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