Spotlight on MND


On being a carer

Posted 13/10/2016 at 8:45PM by Sue Needham

Just being there for someone who knows the end of life is imminent is a special role. My experience as carer for my husband crept up for many years before the diagnosis of MND was confirmed. 

Caring is a part of life and of course ultimately death. Its an individual process that no one person undertakes the same as anyone else. 

My husband's desires were a natural guide for me as carer. 

He wanted to continue to cycle with his mates. 

So he did. 

With much difficulty he was able to mount the bike, then maintain balance and cycle with his group of friends. 

This meant everything to him in his last six months of life.

Assistance and encouraging his choices was difficult for me as carer. Knowing the risks and consequences to MND decline meant that his life could end suddenly while cycling. 

Accelerating the deterioration of his condition (by aerobic exercise) meant a shorter life.

Yet this was about him, his limited time left.

In retrospect I'm so pleased that I recognised the difference in being a short term carer (me and MND) and a long term carer. 

This acceptance altered and framed my role. 

Knowing that  my carer role would soon end enabled me to 'park' my own life. 

Now I'm not a 'carer' for anyone in particular but I do care.
National Carers Week is 16–22 October 2016.

The State MND Associations provide individualised support to people living with MND. Together with MND Australia, the State MND Associations work as a network to promote best practice in MND care, and encourage and promote equitable state-based services to help people with MND and their carers live better. Find out more about State MND Associations.


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