If you’ve been diagnosed with Parkinson’s and have children or grandchildren, you may be thinking about how to talk to them about your condition. Maybe you’re worried about how to start the conversation or how they’ll react. You may also be concerned about how your Parkinson’s will affect family life. However, once your family understands how Parkinson’s affects you, they may also be more understanding with you.
Talking to your family
Friendships, family, romantic, and workplace relationships may have been affected by Parkinson’s decades prior to a formal diagnosis due to early changes in mood and motivation. Talking about this and being aware of what symptoms may have impacted your family is a good starting point for discussion. Due to the fluctuating nature of the condition, regular updates about how you’re feeling, what supports and help you might need also may change day to day. As you address your capacity to participate in family activities, be aware of when you are ‘on’ to do the most cognitive or mentally-taxing things then.
As Parkinson’s progresses, more changes can also occur due to medication side effects or the condition’s progression itself. Cross this bridge as it comes and continue being honest and open about how you are feeling and how this may impact your loved ones.
Role Changes
The diagnosis and efforts to slow progression through a commitment to early intervention therapies and exercise may require a reduction in work hours, less time for parenting, housework or other family commitments and less socialising with friends. Diagnoses while still of working age means the partner often takes up the bread-winning role to make ends meet. This means less time for kids and housework, while the person with Parkinson’s inevitably picks up those duties if they are at home and not working or working less. Children still at home may also have to take on additional duties and roles around the house and are thought of as “young carers.”
- Other family resources
- Carers Australia & the Carer Gateway can link you to support groups, resources, respite and carer payment information.
- Young Carer Network can give your kids aged 5-25 support, info on the bursary program and more.
- Parkinson’s Australia I am a carer webpage has FAQs and other care giver tips and advice.
- Family Connect sets children up for success and good mental health through Relationships Australia’s guide on how to practice new skills and techniques around listening, appreciation, emotional and self responsibility.
- Family Check-in 2 min survey will provide you with great information. Relationships Australia built this tool after 5 years of research with thousands of families and developed it with the University of Melbourne.
- Relationships Australia hotline call 1300 364 277 (for the cost of a local call) can assist you to navigate those tricky family conversations.
