Carers and family
Adjusting to your caring role
It's natural to feel shock, frustration, and worry—not just for your loved one, but for how you will cope emotionally, financially, and practically. Tensions may arise between you and the person with MND, but open communication can ease these moments. Sharing how you feel with each other can foster understanding and help you care together.
Maintaining your loved one’s independence is crucial for their dignity and self-esteem. While it’s tempting to step in, try to allow them to do what they can. Discuss what help is needed and respect their wishes to do things on their own, even if it's challenging.
Coping is especially hard when your loved one or family members struggle to accept the diagnosis. Gentle, gradual changes can help everyone adjust over time. Sharing caregiving responsibilities early on can prevent one person from becoming overwhelmed. Accepting help from family, friends, or professionals is key to avoiding burnout and ensuring that you have time to care for your own well-being.
Simple acts, like someone cooking meals or helping with household tasks, can ease your load. Respite care or hospice services also offer valuable support, giving both you and your loved one the chance to rest and recharge. Hospices can provide comfort and expertise to improve quality of life for everyone involved.
You may not see yourself as a carer, but without the right support, the personal toll of caregiving can be significant. For advice and assistance, please contact your local MND Support Advisor whenever needed.
Sharing the care
It is important for the principal carer that others become involved at an early stage, so that their learning and knowledge can develop along with those of the principal carer in order to avoid over-reliance on one person only.
The obvious way to avoid this possibility is to actively plan to share the responsibilities with others and to accept help. That way there will always be someone who can take over from you. They may not be as knowledgeable or as experienced, but they will learn once you are not there.
The older you are, the more important this becomes, as being a full-time carer can have detrimental effects on the health of the carer.
Carer 'burn-out' is not uncommon and can only be guarded against by making sure that you have adequate time off from caring to attend to your own needs.
Sharing the care will reduce the chances of you being over-burdened and give you a chance to recharge your own batteries. It is most important that carers put their own health first.
Practical help can come from a number of different sources. Family and friends are often the first ones to rally round. Often people want to help but don’t know what to do – creating a list of practical, simple ways people can help is useful. When someone offers to help, you can let them know different things that would be helpful, and they can choose what they want/can help with.
Someone cooking a couple of meals for you all each week, someone else taking responsibility for your laundry or light housework and so on can all help take little bits of pressure off you as the principal carer.
Respite care, day hospice or day care is sometimes available through local hospices or private hospitals. Hospice provides services to those with a life limiting diagnosis to enable them to live well and get quality of life. People do go into hospice for short stays and return home again.,
The experience and expertise brought by the hospice movement is an invaluable tool for a carer for someone with MND. Not only can it bring comfort to the person with MND it can also provide reassurance and breathing space for a carer.
Finding support
At each stage of caring, you will need to know where to find information and other kinds of help to support your role. Your MND Support Advisor can be your primary contact for information and support, however the links below may also be helpful.
Last updated:
23 August 2024