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.
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.
As well as informal support from the community, day respite as well as overnight/short respite can be arranged.
Carers WA aim to enhance and promote carers’ health and wellbeing by focusing on their emotional and social support needs. They run in-person and online support groups across WA as well as a variety of other services.
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.
Links
Experiences
Simon has always been an avid cyclist. Since his partner Alice was diagnosed with MND he has stopped going on his regular rides and has lost touch with his cycling friends. With the support of his adult children, Simon is now able to get back on his bike two mornings a week. One of his children comes over early to sit with Alice whilst he enjoys a ride and a coffee at the café with his friends.
We would love to hear your feedback on the MND Family Carers Information Toolkit. Please click here to fill out the feedback form.
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