Help for families and carers

The PDS can offer you support and advice to help you understand more about Parkinson's and to help you with the practical and emotional aspects of caring.

Some general tips for carers, families and friends include:

• Acknowledge and accept your feelings. Don't be afraid to talk to someone if you think it might help.

• Set realistic goals for yourself and the person you are caring for. Don't try to do too much. Take pride in any achievements you make, either separately or together.

• Try not to be too protective of your partner. Encourage them to do as much as possible for themselves, even if it takes longer. 

• Keep time for yourself - for hobbies, visits to friends, or anything else you enjoy. 

• Look after yourself - don't neglect your own health.   Relaxation techniques can help, particularly to alleviate stress.

• Accept help from other people and obtain information on the services that may be available to help you as a carer.  It is important to seek help before problems reach a crisis point.  Planning for the future is also important.

• Keep your sense of humour - many carers say that keeping their sense of humour has helped enormously with caring.  Don't let little things throw you.

The PDS publishes a number of resources to help carers.  These include:

The Guide (B71) - provides information and support to help carers of people with Parkinson's
 

Carers' Assessments (FS 46) - information sheet which provides information advice on applying for a carer's assessment.

No More Secrets (V7) - a video for new carers.   Contains information to answer many of the common questions and concerns that new carers have about coping with Parkinson's.   Carers also talk candidly about their experiences to provide a positive insight into their daily lives and give practical clear advice and encouragement to other carers.     £21 to buy (including postage and packing)

The Long Term Parkinson's Carers Companion: An A-Z Guide (V9) - a video for people who have been caring for some years.   The video aims to give long-term carers practical information to help them cope with some of the common problems they may experience.   It includes contributions from professionals and long-term carers.  £23 to buy (including postage and packing)
 

There are also specific carers organisations which can offer you help and support.  These include:
Carers UK

Information and support to people who are caring at home. They have branches and local offices throughout the UK.
Website: www.carersuk.demon.co.uk

Crossroads - Caring for Carers
Provides care attendants who come into the home to give the carer a break. 180 autonomous schemes throughout England, Scotland and Wales.
Website: www.crossroads.org.uk

The Princess Royal Trust for Carers
Provides support, information and centres for carers throughout the UK.
Website: www.carers.org

The PDS has a number of publications to help children and young people understand more about Parkinson's and find out what help is available.

These include:

Gramps has Parkinson's/Grandma has Parkinson's - illustrated booklets which are aimed at children under the age of 8.   These are also available with Afro-Caribbean and Asian versions.   (Free of charge but postage and packing of £1 charged)

Our Mum has Parkinson's Disease - an illustrated booklet aimed at children aged from 3-11 years. (Free of charge but postage and packing of £1 charged)

Parkinson's Disease: A Guide for Young People - aimed at young people aged 10 to 14 years. (£5 including postage and packing)

We are indebted to the Parkinson's Disease Society for their help in compiling this section.