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 below), rather than simply taking each day as it comes.
Good outcomes for carers occur when:
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:
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 NZ Support Worker can be your primary contact for information and support, however the links below may also be helpful.
A national information centre for New Zealanders who support seriously ill, disabled and frail friends and family members. On the excellent Carers NZ website you can download an information pack, subscribe to their quarterly magazine for caregivers, find services, support, resources, strategies for coping and ask questions. You can also phone the Carers NZ helpline on 0800 777 797.
If you’re the unpaid full-time (more than 4 hours per day) carer of a disabled person, then a Carer Support subsidy is available for you. Carer Support provides reimbursement of some of the costs of using a support person to care and support a disabled person, funded by the Ministry of Health. This means you can take some time out for yourself.
Individualised Funding is a very useful way of paying for disability support services that can provide a carer with often much-needed practical assistance, such as household management (eg cleaning, meal preparation) and personal care for the person with MND (eg getting dressed). See Financial Assistance for more information.
Hospice New Zealand has designed a booklet to answer some of the questions or issues that might come up for you as a carer. The type of topics covered in A Guide For Carers include circles of support, home nursing tips and practical matters. You can download and print the full booklet or just the chapters you need.
The Ministry of Social Development also publishes A Guide For Carers. This is a different publication to the Hospice guide, above. It includes information on services and supports available for carers, such as financial help and transport. You can download the updated booklet here or call Work and Income on 0800 559 009 for a hard copy.