Carers and Families
This page is for the families and carers of people affected by Parkinson’s. Parkinson’s New Zealand and our 20 divisions provide support not just for the person with Parkinson’s, but for their families and friends. Below are some tips and hints for carers and families.
Caring for the Carer
Carers play an extremely important role in the lives of many people with Parkinson’s, by providing much needed practical and emotional support. Caring for someone can be very rewarding however it can also be extremely hard, especially when the carer feels isolated. The needs of the carer are as important as those of the people they are caring for, yet they often get overlooked because attention tends to focus on the person with Parkinson’s. It is vital that carers maintain their own health and wellbeing while caring in order to cope with the challenges they can be presented with. Below is a checklist for carers to consider.
1) Getting information
Make sure you have all the information you need to care for the person you are supporting. Parkinson’s NZ and Carers NZ can be important sources of information as can the health professionals you are in contact with.
2) Keeping records
Keep a diary of the symptoms and difficulties the person you are caring for has and the details of your caring role. This can help you keep track of how living with a disability affects you, and can assist you when communicating with health professionals.
3) Financial help
Check what financial benefits you could be entitled to, ask a Parkinson’s Community Educator or Work and Income to advise you on this.
4) Dealing with emotions
Don’t be surprised if you have complex, conflicting and fluctuating emotions about caring. Talking about your feelings and what you are doing is important. Some people prefer to talk to the person they are caring for, or friends and whanau. Others find it helps to talk to someone who is not so closely involved in their lives such as a counselor or support group.
5) Networking and support
Try to have contact with other carers. Many carers find contact with other people who are in a similar position is the key to providing invaluable mutual support, information, ideas and friendship. The internet can be a great place to start with this.
6) Encouraging independence
Wherever possible, promote independence on the part of the person you are caring for, even if this means activities take longer. This can help to improve their self esteem and can ease some of your responsibilities.
7) Asking for help
Make it clear what you are willing to do. Set priorities and don’t be afraid to ask for help when you need it. Sometimes breaking down large difficulties into smaller, more manageable pieces can help. Remember you don’t have to do everything single handedly, and talk to health professionals or support groups for advice on solutions.
8) Maintaining a lighter perspective
Try to keep your sense of humor. Many carers say that seeing the funny side of things has helped them and the person they are caring for enormously.
9) Taking time off
Where possible, try not to make Parkinson’s the sole focus of your life. Make sure that you and the person you are caring for have things that you like to do together that are not related to Parkinson’s or health. Having time away from each other to pursue individual interests is also important.
10) Looking after yourself
Make sure you maintain your own health and wellbeing. Try to eat well, exercise regularly and consider learning relaxation techniques. Take advantage of any respite care facilities that are available to you and the person you care for. If you find your responsibilities overwhelming you or you are feeling depressed or exhausted, make talking to your doctor your top priority.
Source: European Parkinson’s Nurses Network Journal, March 2009.
Carers New Zealand is an organisation especially for carers of people with a disability
The Ministry of Social Development publishes: A Guide for Carers. This outlines the government support and services that are available to carers, current edition 2013.
Ministry of Health information on Respite Services and Carer Support
The Parkinsonian, Parkinson's NZ's quarterly magazine, has a regular feature called Carers' Corner. Some of the recent articles are available below
Having plans in place - New
Making and resolving complaints (about health or disability services)
Book review - Caring in the Comfort of home, a guide for carers (UK edition) - this book is in the Library
Our videos page contains some advice for people with Parkinson's who have young or teenage children.