Being a care partner for a loved one with Parkinson’s

Caring for a loved one with Parkinson’s is a journey that often redefines your role in the relationship. As Parkinson’s progresses, you may find yourself shifting from being a parent, partner, spouse, sibling or child to taking on responsibilities as both a carer and a manager. This transition can be emotionally complex but also deeply rewarding as you support your loved one through their journey.

The Carer Role: compassion & emotional support

As a carer, your focus is on providing emotional support and practical help while maintaining your loved one’s sense of independence and dignity. Your role may include:

  • Encouragement: Supporting your loved one as they manage the challenges of Parkinson’s, whether that’s learning to adapt to motor symptoms, maintaining medication routines, or coping with the emotional impact of their diagnosis.
  • Practical Assistance: Helping with daily activities such as dressing, cooking, bathing, or modifying the home environment for easier access. Empowering your loved one to do what they can, so their independence is preserved wherever possible.
  • Emotional Presence: Listening to their concerns and being a source of comfort. Parkinson’s can feel isolating, so your understanding and reassurance are invaluable.
  • Nurturing Relationships: Strengthening your connection by finding ways to enjoy shared activities, even if they need to be adapted.

The Manager Role: organisation and oversight

Taking on the manager role means shifting into a more structured and proactive approach to ensure your loved one receives the care they need:

  • Coordinating and attending appointments: Keeping track of visits to your care team, like neurologists, physiotherapists, and speech pathologists. Ensuring the care team communicates effectively and shares updates about your loved one’s condition with you and each other. Asking for early reviews when circumstances or symptoms change.
  • Medication management: Overseeing medication scripts, filling prescriptions, filling pill boxes, maintaining schedules (meds on time, every time), tracking side effects, and liaising with GPs for adjustments or advice. Staying informed about new treatments or therapies that may be beneficial.
  • Planning support systems: Establishing a routine that includes exercise, therapeutic activities, and community engagement like Parkinson’s support groups.
  • Problem solving: Identifying and addressing hurdles such as accessibility issues or financial concerns.
  • Future planning: Preparing for long-term needs, including Advance Care Directives, wills and other legal or financial arrangements.

Balancing the Carer and Manager Roles

The key difference between these roles is that being a carer involves emotional connection, while being a manager focuses on practical coordination. Balancing these roles requires adaptability, as different situations call for one more than the other. Combining compassion with structure ensures your loved one is cared for while fostering meaningful moments of connection.

Don’t forget to recognise your own limits and seek support when needed—it’s essential for carers to look after their own wellbeing too.

Self-Care for Carers

Being a carer can be physically and emotionally taxing. Here are some tips to help maintain your wellbeing:

  • Take Breaks: Schedule time for yourself to recharge, whether through respite care, hobbies, or relaxing activities.
  • Stay Connected: Join carer support groups, online or face-to-face, to share experiences and gain insights from others who understand the demands of caregiving.
  • Learn to Delegate: Don’t hesitate to ask for help from family, friends, or community services to ease your responsibilities.
  • Celebrate Small Wins: Acknowledge the moments when things go well—these can help sustain motivation and positivity.
  • Counselling and Support: Consider seeking professional counselling to help process emotions and develop coping strategies. Your GP can give you a mental health plan to access subsidised support or access the Carer Gateway for further assistance.

Helping carers as a friend or family member

National Carers Week 2025 has some helpful tips for you to help a loved one that is caring for someone with Parkinson’s: 

  1. Show your support for carers by checking-in on them regularly. There are good days and bad. If you check in once on a good day, you might assume all is well all of the time. Parkinson’s symptoms fluctuate so it’s best to check in regularly as there will undoubtedly be bad days where the carer needs support. You can:
    • Encourage carers to talk if this is helpful to them.
    • Validate their feelings without judgement.
    • Avoid discussing sensitive matters in front of the care recipient as it could make them uncomfortable.

  2. Offer to provide carers with a break and time for themselves to recharge. You can:

    • Run errands for them.
    • Help with household chores like laundry, cleaning, cooking, budgeting and shopping.
    • Plan a social activity together or take their loved one out for coffee so they can have a break.

  3. Initiate support. Carers often prioritise the wellbeing of the person they care for over their own needs. They might struggle to seek assistance due to a sense of guilt and shame or fear of being judged. You can:

    • Ask them on how you can help them.
    • Listen to what they need – don’t assume you know!

  4. Remind carers to take care of themselves and prioritise their own physical and mental health. You can:

    • Share helpful resources such as health and wellbeing apps and support groups.
    • Go for a walk or out to coffee with them.
    • If you are an employer, provide carers with flexible work-arrangements. See Carer Inclusive Workplace Initiative

Where to get help in Australia

1. National Disability Insurance Scheme (NDIS):  The NDIS provides funding for disability-related supports and services, including personal care assistance, equipment, home modifications, and therapies to people living with young onset Parkinson’s (under the age of 65). Parkinson’s is considered under Section 25, early intervention eligibility criteria, especially for those with significant functional impairments. https://www.ndis.gov.au

2. My Aged Care (MAC): MAC offers support to older Australians through government-funded services such as home care packages, respite care, and personal care assistance. https://www.myagedcare.gov.au

3. Parkinson’s Australia and State Organisations: These organisations provide advocacy, education, and support tailored to people with Parkinson’s and their carers. State organisations can connect you with local resources, funding options, and healthcare professionals.

4. Carer Gateway: Carer Gateway offers counselling, respite care, and practical advice to carers, alongside access to financial assistance and community support. https://www.carergateway.gov.au

5. Community Services and Charities: Many local councils, organisations like Meals on Wheels, and charities provide practical assistance and emotional support to carers.

6. Carers Australia has a range of resources available on our website, which will help you learn more about the NDIS and general carer wellbeing.

7. If you are a carer under the age of 25, you can find a range of supports and services, including the Young Carer Bursary program, on the Young Carer Network. 

8. The HELP App provides a platform to achieve this. It assists individuals and families caring for someone at the end of life by coordinating the practical and emotional support they need from friends, families, neighbours, and relatives while keeping them connected to their support network even when they are at home or hospital. HELP makes sure that the person needing help gets the right help at the right time by keeping everyone in the loop in their support network. The Healthy End of Life Program (HELP) App is free and available to download from the App Store and Google Play.

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