Support > Family Carers Information Toolkit
The feelings and worries you may have
Caring for a loved one with motor neurone disease can be emotionally demanding and it’s normal to feel grief, sadness and fear.
You might not like to think of yourself as a carer, but if you care, you're a carer and it's a useful term to get used to. Carers sometimes find it difficult to take time out from being a carer. Taking care of yourself is an important aspect of caring; ask for support from your family and friends who are usually very willing to support you.
We encourage you to take regular breaks from your caring role and have regular catch ups with friends. Think about the things that you like to do, the people who provide you with support and find time for your own needs and health. It may be as simple as having a coffee catch up with a friend once a week, going to a yoga/exercise session or getting your hair/nails done.
Your MND Advisor and Support Coordinator, social worker or nurse can suggest ways you can talk to your family about the support you need.
Counselling for carers is available through the Carer Gateway by calling 1800 422 737. Your GP can also arrange referrals under a mental health plan if you feel you need more formal support. This might be a community psychologist or social worker.
If you are in paid employment, your employer may offer support via an Employee Assistance Program (EAP). These services usually include a number of free sessions with an external provider. The service is confidential (your employer won't know you are accessing it). The services aim to provide emotional, mental and general psychological support and are usually available for other immediate family members as well.
The Carer Help website has resources for carers to learn what to expect and how to communicate, plan ahead and make shared decisions. Included is a library of resources, organised in different categories to make it easy to find information. They have also developed five carer pathways, based on what carers commonly experience over time when caring for someone approaching the end of their life.
MND Connect have advice and information on caring for a loved one with MND.
MND Victoria hold online support groups three times a month. Kitchen Table Conversations are held on the 1st Friday each month at 2pm and the 3rd Thursday each month at 7.30pm. These are facilitated by the Carer Program Coordinator, Andrea Salmon, along with a volunteer who is a past carer. On the 2nd Monday of the month at 2pm there’s a group only for male carers led by one of our MND Advisors, Eric Kelly and a past carer who is a volunteer.
Carer Lunches and Carer retreats provide an opportunity to step away from caring, meet other carers, do something fun and perhaps learn something new for your caring role.
Other agencies providing support to carers:
Webinar Recordings
Carers & Sleep
Sleep was the topic of conversation at a recent Kitchen Table Conversation. Andrea Salmon, an OT by training, lead the discussion.
Introduction to Mindfulness
Mindfulness is a mental training practice that teaches you to slow down racing thoughts, let go of negativity, calm both your body and mind, while cultivating compassion and friendliness towards yourself.
On June 13 Carmela Quimbo presented a session introducing us to mindfulness and leading us through 3 mindfulness exercises. The session as recorded to enable these to be accessed in your own space and time. Please email info@mnd.org.au if you have questions or feedback after watching the recording.
Creating and Capturing Memories
Steph Cross and Deb Olive share ideas for making and keeping memories, including information on the MND Vic Life Story Program
Experiences
Louise's experience
Louise is seeing a counsellor regularly so she can talk about worries and feelings that she has. She has a strong connection with her local community club and tries not to miss her weekly catch up with them.
Cathy's experience
Cathy feels able to manage her feelings and worries. She has a close circle of friends that she is able to talk to whenever she feels overwhelmed.
Jack's experience
Jack feels unable to talk to family and friends about his worries and feelings. He doesn’t want to upset his wife Sue who is already concerned about the impact her illness is having on him. Jack feels that he could benefit from some professional counselling and has made an appointment with his GP to complete a mental health plan which will give him access to subsidised counselling.
