Carer Support

Caring for people with PD

What is a carer?

Carers are people who look after family, partners, or friends who need help because they are ill, frail or have a disability. The care they provide is usually unpaid.

Caring can be both very demanding and very rewarding.

Caring for people with Parkinson’s Disease (PD)

To start with, people with PD may need little practical help, but later they may need to make changes in their lives to learn to live with PD. As someone caring for a person with PD, you may also need to make changes in your life.

It is very important that:

• You do not neglect your own needs
• You seek help and support
• You take a break

Below, you will find some information that should help you look after yourself, as well as the person you are caring for.

• Accept your feelings, and talk about what you do, and how you feel
  • It is normal to experience negative feelings towards the PD patient you are caring for, such as fear of what the future may bring, anxiety, depression, resentment or confusion about the changes in your lives and relationships
  • A problem shared, is a problem halved! - Talk to the person you are caring for, to family, friends, and other people in a similar situation, your family doctor, as well as to the doctor, who is taking care of your close one with PD. In addition,  it may be of great value to participate in activities arranged by the PD support groups and organisations in your own country
  • Keep a diary of the Parkinson's symptoms and problems that the person you are caring for has. Let the doctor and nurse know, in which activities your assistance is needed during the day and night

• Find out about PD, the various Parkinson's symptoms, how these develop and get worse, and how treatment can positively affect them
  • Understanding as much about PD as possible will help you

• Plan ahead, considering issues such as employment, housing, money, and leisure

• Seek help for dealing with stress
  • Give yourself permission to take time off and help yourself relax
  • Breaks from caring are known as ‘respite care’ 
  • Getting help with care to allow you to take a break will benefit you, as well as the person you care for

• Get the most from health services
  • As a carer, you are usually given special consideration because of your role and the pressure it may place on you
  • Make sure your family doctor is aware that you are a carer and that this is highlighted on your medical file

• As PD develops, specialists such as occupational therapists, physiotherapists, dieticians, district nurses, and PD nurse specialists can help you and the PD patient you are caring for
  • You may get more involved in physical caring tasks and helping with managing medication
  • You may need training to make these tasks easier

• Find out what benefits and allowances you are entitled to as a PD carer, and claim them
  • In many countries there are laws to support carers, so you should find out what financial benefits you are entitled to
    • This usually involves a formal assessment of needs both for the person you are caring for, and for you, as the carer
    • Assessments may result in help for the person with PD, which in turn helps you, equipment to make caring easier, breaks for you from caring, and information about services that can support you
    • Charges for services offered following  the assessments may depend on your financial circumstances and the criteria in your area/country
    • Financial help could go towards services such as respite care, or caring support

• If you are an employee with caring responsibilities, talk to your employer, who may be able to help you in ways that you have not considered
  • Ask about flexible working, leave arrangements, employee assistance programmes

• Make yourself heard

• Network and seek support
  • You are not alone - Meeting people who are in a similar situation can provide invaluable mutual support, information, and friendship
  • There are various ways to make new friends, such as joining local PD support groups, and internet PD forums
    • The internet provides help and support at your fingertips

All in all – your support is indispensable to your close one with PD. Therefore, take good care of yourself, so that your energy batteries are regularly charged, since – if you don´t take care of yourself, you won´t be able to take care of your close one either.