Carers and family

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 Team Member whenever you are in need of advice and support.

Information for carers

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 rather than simply taking each day as it comes.

Good outcomes for carers occur when:

• the carer is able to cope with their caring role,
• the carer gets a regular break from caring,
• the carer is informed and knowledgeable about their caring role and the needs of the person they care for, and
• the carer feels valued, supported, and listened to.

We highly recommend you explore the resources below, or call Work and Income on 0800 559 009 or Carers NZ on 0800 777 797 for a hardcopy.

Adjusting to your caring role

Learning that somebody close to you has a serious and disabling illness affects the whole family, and others who are close to you.

If you are close to somebody who has MND, you are likely to experience feelings of shock, disbelief, frustration, confusion, and anger similar to those felt by the person with MND. Not only do you have to cope with your own feelings, but also those of the person with the disease. You may also worry about how you will cope financially, or with the care the person with MND may require.

The stresses of a disabling illness will almost certainly mean that you and the person with MND become angry with each other on occasion.

This is to be expected - it is the closeness of the relationship that allows feelings to be expressed. If you can, try to explain to each other how you feel. An honest discussion will help you to care together.

Because you care for your family member, it may be tempting to do everything for him/her.  Continued independence is important for self-esteem and dignity, so while helping where necessary, allow the person to do things for him/herself if possible. It is helpful to carefully negotiate what tasks it is appropriate to assist with, and what tasks the person prefers to do for as long as possible, even if it is difficult or takes a long time.

The intellect is not generally impaired in MND, so it is important that you do not take over decision making for him/her.

It is particularly difficult to cope when a person with MND, or another member of the family, is not ready to accept the diagnosis or to make realistic plans for the future. The most effective strategy is to introduce changes gradually and gently, allowing the person time to adjust.

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.