“I’m okay, I’m not the one living with MND, I’m just supporting them to live their best life.”  

If you know a person caring for a loved one with MND you’ve likely heard this phrase before, perhaps while checking in to ask how they’re doing. If you are the person caring, you’ve also probably found yourself saying it. 

The truth is that caring for someone diagnosed with MND is often an all-encompassing job, particularly for the primary carer, and they do need support—regardless of whether they ask for it.  

Not only are they carrying the emotional weight of what’s happening to their loved one, they’re taking on a lot of physically, emotionally, and mentally demanding tasks.  

When you ask a carer how you can help, the question can feel a bit overwhelming for them to come up with an answer. Similarly, taking a moment to ask someone to help might feel impractical or burdensome. The best tip we can give is to offer to help with something specific, rather than asking what you can do. 

Just in terms of day-to-day running of a household, a primary family care giver usually takes on the roles the person with MND had, as well as continuing with the things they’ve always done. If you can take a practical job off of their list, it helps make their load more manageable.  

If you know a few people keen to help, you can suggest setting up an online group that will respond to call outs. This could be a whatsapp group, a ‘circle of friends’ in HELP app, or Gather My Crew App. A go-to group makes it easier for a carer to see if someone can take on a task, such as driving someone to an appointment, because they don’t have to keep trying to contact different people. 

Whether it’s regular help or a once off task, there are things you can do to help—you just have to offer. 

Read more about MND Victoria's support for carers here.