Caring for a loved one with Motor Neurone Disease can be emotionally demanding and it’s normal to feel grief, sadness and fear.
If you have children, you may have extra worries on how your children are coping or how to talk to them about what is happening.
We encourage you to take regular breaks from your caring role and have regular catch ups with friends.
Your MND Advisor, social worker or nurse can suggest ways you can talk to your family about the support you need.
Your GP can 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 immediate family members as well.
MNDAWA has a grief counsellor that carers can be referred to. Contact your MND Advisor to access this service.
There are a number of not-for-profit organisations that provide counselling services. My Community Directory contains details on community services across Western Australia. MensLine Australia offers telephone and online counselling for Australian men.
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 so it's 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.
The UK Motor Neurone Disease Association have produced a guide for carers supporting someone with MND. The guide has information on carers’ rights; assessments and services; and how to manage difficult emotions that you may feel when facing the demands of the caring role. Whilst some of the information is specific to the UK (e.g., support numbers, assessment processes, etc) it contains some very useful general information about MND and looking after yourself as a carer.
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 XXX club and tries not to miss her weekly catch up with them.
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 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.
We would love to hear your feedback on the MND Family Carers Information Toolkit. Please click here to fill out the feedback form.feedback form