For many people, Christmas is a special time of year spent with family and friends. It is a time for celebrating, sharing gifts, enjoying food, taking a break from routines and creating cherished memories together.
This is also true for people living with MND and their families. As Christmas approaches, many of us hold hopes and expectations for what the season will bring. However, while the expectations may be familiar, the reality can sometimes look different.
For MND carers, Christmas can bring a mixture of emotions. Alongside moments of joy and connection, there can also be increased demands, practical challenges and a heightened awareness of the changes that MND brings. Carers often tell us that familiar traditions, family roles and ways of celebrating may need to be adapted.
Many carers have shared their experiences of navigating the holiday season, including:
- Changes to routines and traditions
- Reduced access to regular supports when services close for the holiday period
- Family dynamics and relationship pressures
- Financial stress
- The challenge of visiting homes or venues that are not easily accessible for MND equipment
- Managing food and eating requirements
- Balancing social expectations with the realities of caring
- Feelings of isolation or being overwhelmed.
While these challenges are real, many carers also tell us that some of their most meaningful Christmas memories come from simplifying plans, focusing on what matters most and finding new ways to celebrate together.
Tips for managing expectations and reality
Every family's situation is different, but the following strategies may help make the festive season a little easier:
- Plan ahead where possible
- Give yourself permission to simplify. Hold on to what matters most and let go of what doesn't
- Avoid comparing your Christmas to anyone else's
- Share tasks and ask for help when it is offered
- Create new traditions that suit your current circumstances
- Set realistic boundaries and expectations
- Schedule breaks and moments for yourself because it is your Christmas too
- Make space for sadness, gratitude and joy to coexist
- Consider food options that everyone can safely enjoy together.
Sharon's story
Many carers will recognise aspects of their own journey in Sharon's experience. As a former MND carer, Sharon shared her memories of the last Christmas she spent with her husband Ian, who was living with MND.
“Our last Christmas with my husband was 2021 and he was gone by Nov 2022. Being one of 7 and a very confident man, he didn't shy from going out and being among people. He's always loved that so our last Christmas he wanted to do 'normal' and go to his sister's with all 80 odd family for lunch. These were their last family photos as siblings.
I found the few hours we were there super hard. Where to park so Ian didn’t have to walk far on the walker, his muscles were already quite wasted;finding him things he could safely eat; navigating small children, verandah and steps, and to be honest.. uncomfortable looks from family that hadn't seen him for a while.. we were also outside in 40 degree heat and Ian wilted very quickly. Then to top the day off there was a hose on the lawn and he fell over it as we went to leave!
To be honest I hated it. I was so overwhelmed with what I needed to watch out for and help with and embarrassed for him (this tiny frail man was not who they were all used to seeing. My husband was a big 6ft 3, and solid and strong). I wish we had just stayed home and said 'we're here... come visit if you'd like, we'd love to see you.' Our kids felt the same.
We spent the afternoon and evening with just our kids and grandies and it was terrific.”
Sharon’s story reminds us that Christmas can be tough. It can bring unexpected challenges as well as treasured moments. It doesn’t need to look perfect, or go to plan, to be meaningful. Sometimes the most treasured moments come from adjusting expectations and embracing what is possible.
A note to Sharon and to all MND carers
From everyone at MND NSW, please know that you will be in our thoughts throughout the Christmas and holiday season. Thank you for allowing us to be part of your journey.
Whether this Christmas is filled with celebration, reflection, adaptation, remembrance or all of these at once, we hope you find moments of connection and comfort along the way.
To all current and former MND carers, thank you for the care, dedication and love you give every day.
To Sharon, thank you for sharing your story and your treasured photos of Ian with us.
This Christmas, we raise a glass to you all.
If you need support this Christmas
If you're feeling stressed, overwhelmed, sad or frustrated, talking with a counsellor may help. A counsellor can provide emotional support and practical strategies to help you cope with the challenges you are facing.
Counselling for carers | Carer Gateway 1800 422 737
If you need immedicate support, call a crisis service:
- Lifeline: 13 11 14 or Text 0477 13 11 14
- Beyond Blue: 1300 22 46 36
In an emergency
Call Triple Zero (000).
For information about preparing for emergency care: Planning for emergency care
