Parenting with young onset Parkinson’s requires balancing your health needs with your children’s wellbeing. Being honest with your kids about your condition in an age-appropriate way is crucial. Involving them in your care routine can foster understanding and empathy. Prioritising quality time and creating special moments together is essential. Seeking support from family, friends, or support groups can help manage your responsibilities. Remember, your love and presence are what matter most to your children.

Tips for talking with your children

Approach

Select a time to talk with your children when everyone is calm and you don’t have to rush the conversation. Preparing yourself as much as possible before the conversation can help. If you have more than one child with a large age gap, consider whether to speak with them individually or together. Young children often take cues from your body language and tone of voice rather than what you say. It may be helpful to:

  • Rehearse what you want to say while out for a walk or in the bathroom.
  • Prepare by taking deep breaths and having something to touch to stay connected to the external world.
  • Let the kids know you need to speak with them about something serious, but that you are okay.
  • If you become upset, it’s okay for kids to see your emotions.
  • Invite your children to share any worries or questions. Keep communication open and light.
  • Don’t be surprised if your children don’t seem upset or are unaffected. A diagnosis can be difficult for children to process.
  • Conversely, your children may become protective or distressed. Acknowledge their worries and reassure them that your health condition doesn’t change your role as their parent or how much you love them.

What to say

Think about what information to share with your children. Focus on key points in clear language, adding more information over time. Your first conversation may include:

  • “I went to see the doctor because I have been having trouble with my…”
  • “The doctor has told me I have a health condition called…”
  • “The doctor has given me some medicine which is helping me feel better…”
  • Talk about the impact it might have or not have: “We can still go to the park, kick the soccer ball, have cuddles, cook dinner, and read books together.” Or when you are feeling particularly fatigued, “Mummy gets tired easily these days, can we sit and watch a movie together instead?”

Addressing worries

Children may worry that you’ll die suddenly. It’s important to be as open as you can, appropriate to their age. Reassure them and answer as much as you can with respect to your circumstances. This could include:

  • “I’m feeling much better now I have medication.”
  • “I’m not going to suddenly die from Parkinson’s…”
  • “We might notice more changes over time, but the doctors will help me stay healthy. I’m also going to do… (lifestyle changes e.g. exercise, eat well, drink lots of water) to help me stay healthy/have more energy.”

Ongoing support

  • Maintain as much routine for your children as possible during times of upheaval. Children benefit from stability, predictability, and consistency.
  • Think about who your children may draw on for support, including at school, such as a teacher or school counsellor, especially at the time of diagnosis or big events like surgery.
  • Having a social worker on the care team is a great addition for the entire family.
  • Consider other safe adults in their lives who are special to them and can provide support.
  • Seek assistance from Carer Gateway and the Young Carers Network.

Involve your children

Be prepared to talk to your children about your next steps, especially if it involves something significant like surgery. Your children may want to know:

  • When and how long you’ll be out of action/away.
  • If there is something important to them coming up.
  • Who will look after them.
  • Who they can talk to if they are worried and you’re not there.

References

  • Zhang, A., Mitchell, L. K., Pachana, N. A., Yang, J. H. J., Au, T. R., Byrne, G. J., & Dissanayaka, N. N. (2022). Caring for a loved one with Parkinson’s disease: The role of coping styles and relationship quality. International Psychogeriatrics, 34(7), 637-644. https://doi.org/10.1017/S1041610221002866
  • Fekonja, Z., Irgolič, N., & Vrbnjak, D. (2024). Family members’ experiences of everyday caregiving for a family member living with Parkinson’s disease: A qualitative thematic analysis study. BMC Nursing, 23, Article 98. https://bmcnurs.biomedcentral.com/articles/10.1186/s12912-024-01767-6
  • Schrag, A. (2023). The emotional challenges of children whose parents have Parkinson’s disease. American Parkinson Disease Association. https://www.apdaparkinson.org/article/the-emotional-challenges-of-children-whose-parents-have-parkinsons-disease/
  • Momentum Magazine, from the Community, July 25, 2024, My Advice for Parenting With a Chronic Illness, Julie Stamm https://www.nationalmssociety.org/news-and-magazine/momentum-magazine/from-the-community/parenting-with-a-chronic-illness

Resources

In Australia, there are several support services available for young carers:

  • Carer Gateway: Provides a range of services including respite care, counselling, and financial assistance. You can contact them at 1800 422 737.
  • Young Carers Network: Offers information, resources, and a platform for young carers to share their stories and connect with others ages 5 to 25.
  • Little Dreamers Australia: Supports young carers aged 4 to 25 through various programs, including mentoring, tutoring, and respite activities.
  • Kids Helpline: Provides free, confidential counselling and support for young people. You can reach them at 1800 551 800.
  • Lifeline: Offers crisis support and suicide prevention services. You can call them at 13 11 14.
  • Reach Out Australia: Provides online mental health support and resources for young people.
  • eheadspace: Offers online and telephone support for young people aged 12 to 25.
  • Children of Parents with a Mental Illness (COPMI): Provides resources and support for children who have parents with mental illness.
  • Young Carer Bursary is a financial support program designed to help young carers aged 12 to 25 manage their education and caring responsibilities.
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