From October 12-18, we celebrated our amazing carers as part of 2025 National Carers Week. During the week, we held a few Support Groups and events throughout the state, and were thrilled to catch up with the carers in our MND Community! We’d like to share some of the feedback we received:
“Yesterday was great. I think it was a particularly positive experience for Colette and Rob. They are both navigating a lot and I think the support group is a good fit for them, everyone was so welcoming and friendly….Thank you (Karen) for all you do for everyone.” - Anna
When asked about what it’s like to be a carer, our Illawarra MND Advisor Karen Keith received the following responses from MND Carers:
• Allison- carer for 15 years- “It’s a continual life adjustment, as symptoms change so do needs and so life in general in a state of continual adjustment.”
• David- carer 18 months- “It’s my turn to care for Shirley, she has been caring for me for 53 years.”
• Robert- “Caring is difficult, especially when the Carer is already caring for other family members.”
• Tony- “Caring is frustrating: not only do I have to think about what I am doing, I have to consider the needs of my wife Chrissy, getting ready to leave the house, doing up shoelaces, turning lights on/off as well as planning for my own personal appointments that will take me away from home (and therefore leave Chrissy on her own)."
• Tracey- past carer- “Have no regrets- do what you need to do for your loved one, leave no regrets.”
• Anna- “Allow others to assist you, those who offer assistance, include them in the journey. It is their way of caring, allow them to care.”
• Michelle- “Being a carer is putting your own needs on hold. This can be hard, especially if the Carer has a health-related need.”
• Lieve- recent past carer- “Caring Continues. In regard to past carers, caring for that person continues beyond the funeral, beyond the memorial service. The need for Carer support continues beyond death.”
• Michelle - “It was absolutely brilliant, and everyone enjoyed it. She felt it was a great opportunity to talk about the demands of being in the position of a carer & the
toll it can take but also the support that is available through MND NSW.”
• And from Helen, a person living with MND - “I’m not allowed to carry the wine bottle anymore.” (This brought much laughter from the group.)
MND Advisor Karen said some of the other issues that were discussed at the event included:
- Genetic testing and the discrepancies that can occur between testing labs.
- Treatments and modes of treatment delivery.
- Future updates on research wanted regularly.
- The loss of a driving licence and the impact on independence.
- Fear of losing driver’s licence just purely due to the diagnosis, not based on the driver’s capacity to drive.
- The use of the term transitioning to other modes of self-transport.
“There was so much empathy, understanding, head-nodding, murmurs of agreement in the room, it was really uplifting for me as an Advisor. It brought home to me, again and
again, the importance of Support Groups in creating a family around people living with MND and their carers. It brought tears to my eyes to share in such comradeship. Thank
you Carers NSW, thank you to the MND NSW Carers Support Team.” - Karen Keith, MND NSW Advisor.
On the Central Coast, MND Advisors Eszter Wong and Shannon van den Bosch held a Support Group meeting. MND carers were talking amongst themselves and in the bigger group. Generally, people enjoyed themselves and enjoyed food, discussion around self-care.
Monica Perry, a past MND carer, was asked by others about her lived experience as a MND carer, her self-care strategies and how she got a break… the benefits of respite care.
At the meeting, MND carers appreciated being acknowledged and the opportunity to chat about self-care and its importance. They also shared tips on what they do, and what
self-care looks like for them.
At the next support group meeting, MND Advisor Eszter plans to provide the carers packs she developed herself with funding from a Carers NSW grant.
Some of the comments about the day from people living with MND included:
- Colin - “Great venue, nice atmosphere which made me feel welcome chatty small group, we will be back.”
- Cynthia - “The lunch was great, easy access into the club and staff were very accommodating, great venue.”
The North West Support Group was held online by our MND Advisor Rebekah Williams, making it accessible for people who live remotely or who have limited mobility and
transportation to join.
The group offered carers a safe space to speak about their experience of caring with someone with MND, including the challenges they have experienced, and the joys of caring as well. It also provided them with the opportunity to connect with other carers.
Carers acknowledged that becoming a carer meant taking on new challenges, with one carer mentioning that you soon become ‘an expert problem solver’.
Connecting with MND NSW and joining activities like the support groups was a great opportunity to share experiences, especially for those in regional areas. One carer said they ‘enjoy hearing from different carers’ at the meetings.
Taking a little time to recharge was also key to being the best carer they could be, with one carer saying ‘I try to get away at least twice a year’.
For National Carers Week, our Carer Coordinator Sandya Manickam organised a special carers’ pack for carers who are part of the MND NSW Carers Program.
The pack was made a reality through grant funding from Carers NSW and Coca Cola, and a team effort from MND NSW staff. It included an acknowledgement to our carers for the amazing work they do, a bookmark full of self-care tips and reminders, and cornflower seeds to brighten their day, and their gardens!
“We are all thinking about our carers, this week and always,” Sandya said.
“The MND NSW Carer bookmark with self-care strategies, the MND signature cornflower seeds, and MND carer recognition card were provided to carers. It was great to see the
received bookmarks during the session, to hear about the relevance of the strategies and that the quotes which remind us to pause resonated so well with the group.”
“Thank you, to Don (MND Carer), for the additional quote ‘A chance to have a smile on your dial!”
“Thank you for also sharing your self-care strategies, such as making time to go on holidays, yoga, kayaking, having a cuppa, going to yoga class, getting a massage. All great self-care strategies that help build our resilience so that we can continue with our caring role in a more sustainable way.”
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