Carers' checklist

The following tips are based on information contained in The Complete Carer’s Guide by Bridget McCall and suggestions made by other carers. They may help you overcome any tiredness and stress you experience, and enable you to cope mentally and physically with the challenges that caring brings.

Getting information

  • Gather all the information you need to give you support and help you as a carer. Your local Parkinson’s association and any carers organisations that operate in your country should be able to advise you on what is available and give you leaflets, booklets and other resources. The EPDA also publishes many useful resources on their websites.
  • The health/social care professionals you are in contact with can also provide you with support and information.

Social services

  • Make sure you have access to any health or social care services that are available to you – including anything that is provided specifically for carers. This might include equipment to help you and the person you are caring for to manage personal tasks, such as bathing.
  • Ask for a social services assessment for the person you are caring for and a carers’ assessment for you. What there is and how you access it will depend on arrangements in the country in which you live. Your doctor or local Parkinson’s organisation should be able to provide you with more information.

Keeping records

  • Keep a diary or record of the symptoms and difficulties that the person you care for has, and the details of your role. This can help you keep track of how caring for someone affects you and assist you when communicating with health and social care professionals.
  • Some people find it helps to keep a worry pad with them, particularly by the bed, to jot down their worries during times of anxiety or through sleepless nights. This helps them to focus on troubling issues as part of their daily routine and can prevent them from being kept awake at night.

Financial help

  • Check what financial benefits you are entitled to. Your local Parkinson’s organisation should be able to provide further advice or signpost you to sources of information about any financial benefits that may be available to you and the person you are caring for.

Dealing with emotions

  • Accept your feelings and talk about what you are doing. Don’t be surprised if you have complex, conflicting and fluctuating emotions about caring, even if you love the person you are caring for very much. Talking about your feelings and what you are doing is important. Some people prefer to talk to the person they are caring for or to family and friends. Others find it helps to talk to people who are not so closely involved in their lives, such as a counsellor, helplines or support groups. Your doctor or other healthcare professionals should be able to provide further information.
  • Remember: value yourself and what you do – self-esteem is important in maintaining a positive attitude and coping well.
  • Look out for any signs of depression and if you think you need help, seek professional advice promptly.

Networking and support

  • Try to have contact with other carers. Many carers find contact with other people who are in a similar situation is the key to survival, providing invaluable mutual support, information, ideas and friendship. There are a number of ways to make new friends, including joining support groups at your local Parkinson’s or carers’ organisation, telephone-befriending networks and Internet forums. Your local Parkinson’s or carers’ organisations should be able to advise on what is available in your area.
  • Delegate some tasks if you have family or friends who are willing to help.
  • Seek advice from a health/social care professional about other alternatives that are available and do accept offers of help or respite care. Without some respite you may become run-down. Even a short break or outing can boost energy levels and your wellbeing.

Encouraging independence

  • Encourage the person you care for to be as independent and as positive as they can, and plan things together where possible. This will promote their emotional and physical wellbeing and improve self-esteem and ease your responsibilities.
  • Ask friends to visit if the person you care for is unable to get out much can keep them in touch.
  • Sharing the past together, using photo albums, music and books for example, can help to keep spirits up.
  • Wherever possible, promote independence on the part of the person you are caring for, even if this means activities take longer.
  • Be open to new technologies that help with independence.

Asking for help

  • Accept that there may be times when you feel negative or overwhelmed – this is a natural reaction. Make it clear what you are willing to do and don’t be afraid to ask for help when you need it.
  • Be realistic about what you can achieve, and don’t push yourself too hard. Sometimes breaking down large difficulties into smaller, more manageable pieces can help. Don’t assume because you are a carer that you have to do everything single-handedly.
  • Learn to say no. Being assertive is a positive, not an aggressive approach. There is no point in saying yes when you know that this is going to add to your stress and overload you.
  • Although it may seem impossible, alternatives can often be found for the aspects that you are not able or do not want to do. Any health or social care professionals you are in touch with may be able to help you find solutions.

Looking after yourself

  • Make sure you maintain your own health and keep time for yourself. You should try to eat well, exercise regularly, and learn relaxation techniques.
  • Incorporating ‘winding down’ time into your evening routine can help you sleep better.
  • Remember that exercise stimulates Endorphins which help to reduce stress and anxiety.
  • If possible, encourage the person you care for to remain active too. Exercising together can be enjoyable and beneficial to you both.
  • Caring can involve a lot of lifting. Look after your back and ensure that you lift safely.

Taking time off and holidays

  • Don’t make caring and Parkinson’s the sole focus of your life
  • Having time away from each other to pursue individual interests is also important, so take regular breaks from caring. This involves making use of any respite care facilities that are available to you in your local area, or perhaps taking a holiday without the person you care for, so that you have time to recharge your batteries. Don’t feel guilty about doing so, as a break will make you much more able to cope with the challenges of being a carer when you return.
  • Make sure that both of you have things that you like to do together that are not about Parkinson’s or health.
  • If you plan to take a holiday with the person you care for, plan well ahead to avoid problems (see the section on Travel for advice). If you find your responsibilities overwhelming or you feel depressed and exhausted, talk to your doctor as a matter of urgency.

Maintaining a lighter perspective

  • A sense of routine and normality will help both you and the person you are caring for maintain interests which lie outside living with the condition.
  • Keeping your sense of humour is also very important. Many carers say that seeing the funny side of things has benefited them and the person they care for enormously. Laughter is very therapeutic and can help everyone to keep things in perspective.

If the person you care for is your partner and your sexual relationships are affected, do seek help and advice from your doctor or healthcare professional. Understanding the possible problems and their causes can help in identifying solutions.

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