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End-of-life care 'grossly insufficient'

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11.01.2019

OPINION: I spent the weekend with a friend who can no longer move his own body. I helped feed him through a tube in his stomach, learned to use the hoist to transport him from bed to wheelchair, and scratched his head/nose/foot when needed. He is 50 years old.

His insightful mind and quirky wit is very much intact; motor neurone disease has not affected his brain. It is one of the cruellest of diseases.

His care is an enormous and constant task. Think of yourself on a rainy Sunday at home with no place to be or chores to do. In your un-busyness, you will eat, clean yourself to some degree, tap on your phone, use the toilet, and look at a larger screen for a while. Without thinking, you will use your fingers, rise to your feet, turn your head, raise an arm, and unconsciously employ every muscle in your body.

None of those movements are possible for people with advanced motor neurone disease. Immobility means all these small movements must be performed by someone else. That someone else is usually a family member, since publicly-funded caregiving provides only for daily personal care such as showering and toileting.

READ MORE:
* The challenge of funding in-home care for aged parents
* Tough time for carers as money cut
* Mum locked in........

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