||Who is a carer and what do
"I'm still his husband
first and his carer second. It's what I do and why I do it that matters"
term ‘carer’ is used to describe anyone who is looking after or
providing support to someone who is ill, elderly or disabled. Most commonly
this is a close relative, friend or neighbour.
people prefer to see themselves solely as a partner, son or daughter, or
other relative and dislike being called a carer. However the term can help
some people and is widely used by professionals. It can help to separate the
practical job of caring, from the relationship with the person cared for.
someone first develops Parkinson’s disease (PD) they may need a lot of
emotional support and encouragement from those close to them.This is one
aspect of caring. As the condition progresses, more practical advice and
hands-on care will need to be provided.
become carers for different reasons. Some people become carers without
realising it, as their relative’s PD progresses and they become more
dependent. If people end up doing caring tasks that they resent, then
frustration and guilt develop and nobody benefits.
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is vital that carers decide what they are and are not prepared to do at an
early stage, so that if necessary alternative solutions can be explored.
Caring alone at home is not always the best option for carer or cared for.
for someone can be very rewarding. However, it can also be physically and
emotionally demanding and affects work, home, family life and free time. In
order to maintain their own health, carers need to ask for help and time off
a carer does not mean taking over everything. It is important that the
person being cared for is encouraged and allowed to do as much for
themselves as possible. This will help to maintain their independence and
The Parkinson’s Disease Society (telephone 020
7931 8080) can provide information and support to carers
Useful books include:
Caring for the Parkinson’s patient: a
practical guide’ by Thomas Hutton, Ray Lynne Dippel and Nathan Slewett
(editors), published in Prometheus
Books; 2nd edition1999 ISBN: 1573926841
Useful websites include:
National Parkinson Foundation: Caregivers
Caregiver survival resources