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Being a carer

Few people ever imagine becoming a carer and it can take time to adjust to this role.

I never thought I would be called a ‘carer’. Where can I find support?

There is no standard template, for each person it is different depending on their individual circumstances and their relationship with the person they care for. But it is quite normal for anyone taking on this role to experience similar symptoms to the person with Parkinson’s, such as fear of the future, anxiety and depression.

There is help available to support you as your role extends over time:

  • The multidisciplinary team (MDT): This group of experts can provide advice and support to help you maintain independence and quality of life, as well as keep you in good physical and mental health. Some of those who may help are your doctor, a specialist nurse, a physiotherapist, an occupational therapist, a social worker, a psychologist, a dietician and a podiatrist for example, but there are many others you may be referred to as and when the need arises
  • Other organisations and groups: There are many other outlets who can provide practical help and advice on various aspects of caring, such as government advice and information services, counselling services, voluntary and charitable organisations, and private agencies.

For more on who can help and how see Caring and Parkinson’s.

I know so little about Parkinson’s. How can I find more information?

Finding out all you can about Parkinson’s will help you and the person you care for to make informed choices about the best care and treatment.

There is a wealth of information both printed and on the Internet to help you find out more about Parkinson’s. 

The Parkinson’s organisation in your country may also have information in your language. See also Our members and Other Parkinson’s organisations.

Can I get any financial help as a carer?

Any help that you may be entitled to will depend on where you live, and on your individual circumstances.

Support will vary but may, for example, include financial allowances, additional support in the home, the providing of specialist equipment, help with transport, or the provision of day or respite care. 

A formal assessment of both you and the person you care for may be required so that your support needs can be identified. Talk to your doctor if you are not sure who you need to speak to in order to obtain further information or arrange an assessment, or ask at your local social services or citizens' advice office.

What help is available for me and the person I live with, to make daily living better?

There are many professionals within the Multidisciplinary team (MDT) who are there to support both you and the person you live with. Together they can help with maintaining independence and quality of life, as well as keeping you in good physical and mental health. They can also help you to learn skills to cope as Parkinson’s progresses and can refer you to appropriate support organisations. Your doctor, social worker or others involved in looking after the person you live with will be able to identify who can help, or in some cases you may be able to refer yourself.

There are many other organisations and groups outside the MDT who can also provide practical help and advice on various aspects of caring, for example, government advice and information offices, counselling services, carers, disability and mobility organisations, voluntary organisations and services, religious or charitable organisations and services and private agencies (but always check the cost involved as charges can be high). 

Your doctor’s surgery, local government office, library or local newspaper may have contact details for these, or you can look on the Internet using a search engine such as “Google”.  

Talking to family and friends can often help, so don’t try to soldier on alone.  Accepting help and advice, is a positive step forward in helping you to cope well so that you can do the best for the person you live with. 

For an extensive list of suggestions and strategies to help with daily living see the Carers’ Checklist.

I feel tired, often stressed and a bit low. I need to look after myself, how can I do this?

Tiredness and stress is very common. Many can feel that caring for someone leaves them physically, mentally and emotionally drained, exhaustion will have an impact on how well you are able to care. When looking after someone else, people forget to look after themselves properly, but it is very important that you look after your own health and wellbeing too.

Keeping healthy is frequently thought of as being free of any illness or disease, but in fact it is much more than that. Good health involves:

  • physical health: a healthy body
  • mental health: being alert and able to think clearly and make judgements
  • emotional health: recognising how you feel and dealing with your state of mind
  • social health: engaging in social activities and interacting with others
  • spiritual health: recognising deep feelings and beliefs – both religious and non-religious – and being in harmony with the world around us.

These tips will also help you stay in good health:

  • General wellbeing: Being preoccupied with looking after someone else can result in ignoring any symptoms or problems that you may have, but it is important to seek prompt advice from a doctor to avoid anything more complicated developing. It is also important to have regular checks on your eyes, teeth, hearing and any other recommended health screening.
  • Looking after your back and feet: Caring for a person with Parkinson’s may involve a significant amount of lifting and turning, putting extra strain on your back, neck and shoulders and feet. It is important to use safe techniques for lifting and handling to ensure minimal strain and prevent injury to your own body. Using cues to encourage transfers can mean that these are accomplished with little or no physical effort. A physiotherapist and occupational therapist can advise further.
  • Diet: A balanced diet is essential to keep you healthy and fit for your daily challenges. It can also play a role in preventing many conditions such as heart disease, cancer, stroke and tooth decay.
  • Exercise: Regular exercise will not only help to keep you fit but can help prevent heart disease, high blood pressure and osteoporosis. It can also improve general wellbeing and vitality so try to develop a regular exercise routine, and where possible involve the person you care for. Walking instead of driving or getting off the bus a stop earlier can help, as can dancing or doing brisk housework .
  • Learn to relax: True relaxation can help to clear the mind and reduce physical and mental strain. Even just 10 minutes each day can be very beneficial, so try to make time to focus on relaxing and finding an inner calm.
  • Complementary therapies: There are a range of therapies that many people find help with relaxation, improving vitality and posture and promoting a sense of calm and well-being. 

See also Caring: Looking after yourself.

What is respite care, and how can I find more information?

One of the most valuable strategies for coping with caring is to have a regular break, often known as ‘respite care’, and to have time for yourself away from your routine and from Parkinson’s. Even brief breaks are important as they provide an opportunity to recharge your batteries, clear your mind, pursue your own interests and return to your role refreshed and revitalised.

It is of course important though that this time is spent on relaxing or doing things you enjoy, and not just catching up on jobs!

Regular breaks can also benefit the person you care for as they will have someone different to interact with or perhaps different surroundings if they go out of the home.

Respite care can mean a number of things including day care or a few days’ residential care for the person you look after. It could also simply be someone coming to the house to cover for you whilst you take some time out for yourself.

If you feel that you need respite care, talk with your doctor or social worker and they will be able to put you in touch or refer you to people who provide such services. How this is financed will depend on the country in which you live so you will need to check locally with your doctor or a support organisation such as your Parkinson’s association or a respite/palliative care organisation.

See also Caring: Respite care.

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