During our recent Care for Carers Program in Gladesville, three former carers came along to speak with the group about their personal experiences of caring for their partner with MND. Many thanks to Dianne, Philip and Colin for coming along to share your experiences. It was so valuable for the course participants to have the opportunity to hear these personal insights about what contributed most significantly to enhancing their quality of life as a couple, as they adjusted to living with MND. Each of these former carers spoke about the social and practical benefits gained by being willing to accept offers of support and involvement from their family, friends and personal community. Some other life-enhancing suggestions included:
- Plan a mini-break or holiday if possible and accept any disability assistance that is available to make your journey easier.
- Use all available supports, printed or online resources and education programs provided by MND NSW.
- Learn about the available local health services or clinics that provide multidisciplinary care and/or home care (your MND Advisor can provide information about all your available options).
- Find reasons and personal occasions to celebrate.
- Don't be afraid to engage as early as possible with available local community palliative care services. Community palliative care can provide support for both the carer and the person living with MND.
- Ask for an occupational therapist to suggest how your current home can be adjusted to meet the potential future requirements of the person in your life with MND.
- Empower and support the person in your life with MND to make an advance care directive.