Taking on the role of caregiver for a loved one with Motor Neurone Disease was likely profoundly unexpected and a role that you may not feel adequately prepared for.
At each stage of caring, you will need to know where to find information and other kinds of help to support your role.
Please contact your local MND Support Worker whenever you are in need of advice and support.
You may not recognise yourself as a carer. Perhaps you say, "I'm just being a husband, a wife, a mum, a dad, a son, a daughter, a friend or a good neighbour".
But without the right support, the personal cost of caring can be high, with many carers experiencing poor health, poverty and disadvantage. It is important to identify yourself as a carer and find out about entitlements such as Individualised Funding (see in 'Finding Support', below), rather than simply taking each day as it comes.
Good outcomes for carers occur when:
We highly recommend you explore the resources below, and also click here to download the booklet 'A Guide For Carers – He Aratohu mā ngā Kaitiaki', or call Work and Income on 0800 559 009 for a hardcopy. This is a fantastic resource for New Zealand carers.
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.
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 hospitals. The common view is hospices are places where living people go to die, whereas those working in the hospice environment often see them as places where dying people go to live, the emphasis being upon treating people as individuals and addressing their specific needs to improve their quality of life.
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.
The information above comes from the following two very useful fact sheets from MND Scotland: