Looking after yourself when you're a carer

Caring for someone with Parkinson's can be challenging.

This information looks at how you can make sure you are taking care of yourself and your wellbeing.

If you're busy caring for someone, it may be difficult to look after your own physical and mental health. But recognising your own needs will help you balance caring with the rest of your life.

It's important to access all of the available help and support for people with Parkinson's and their carers. Having a good quality of life will benefit you and the person you care for.

Keeping a diary can be a useful tool to keep track of what you're doing as a carer. You can then refer to this when you visit the doctor or another health or social care professional, or for a carer's assessment, when applying for financial benefits and so on.

Talking to other people in a similar situation can help.

  • You can connect with and chat to other carers on our Parkinson's UK forum and on our Facebook page.
  • Many carers are members of our local groups and attend meetings and activities, either with the person they care for or on their own.
  • Our Parkinson's local advisers provide emotional support and practical help for people with Parkinson's, their carers and families.
  • Carers UK has a forum for carers where you can chat to other carers, find support and share information.

You can also read about other carers' experiences on our magazine.

Letting your own health suffer or allowing stress levels to rise will not allow you to care well.

  • Make sure you attend regular check-ups and screenings.
  • As soon as you notice an issue, book an appointment so that any problems are managed as quickly and effectively as possible.
  • Look after your back, especially if you have to lift the person you care for. Ask your GP, district nurse or an occupational therapist to advise on lifting, turning or moving aids to assist you.
  • They can also offer advice on equipment and living aids to help the person you care for move around the house more easily without your help.
  • A physiotherapist may be able to help you and the person you care for to maintain general levels of fitness and mobility. You may be referred to a physiotherapist by your GP, specialist or Parkinson's nurse.
  • Recognise the signs of stress and find techniques to help with relaxation. Meditation, yoga or massage are just some ways to relax, but find what suits you best. Activities that absorb your concentration, such as gardening or reading, can be therapeutic.
  • Learn to recognise the signs of depression. This may affect carers as well as people with Parkinson's.

Your GP will be the first stop when accessing health and social services.

  • Prepare for your appointments - keep a diary of how you (and the person you care for) have been, your feelings and any issues that have arisen.
  • Make a list of things that you want to talk about. Keep the list short and put things in order of importance.
  • If you have particular problems, think about how to describe them before you see the doctor. Try to be as factual as possible, and don't feel you have to talk in medical jargon. Just use the words that you feel comfortable with.
  • If the person you care for is happy for you to be there, accompany them in their appointments with healthcare professionals. Also, invite them along if you are happy for them to attend your own appointments.
  • Be honest about your needs, your feelings, and what you think would help.
  • If you're not feeling confident, take someone along with you. Having someone else in the meeting can help you to remember what is said. Taking brief notes might help too.

Talk to the surgery's receptionist to get your caring responsibilities recognised by your GP.

Some GP surgeries have a database of carers. If you are on this, you will be given special consideration because of your role and the pressures it may place on you.

It will make all staff aware of your role, giving you more appropriate appointment times, pointers to other services and support.

You will also be able to get free flu jabs and information about events for carers. It will ensure that any outpatient appointments and admission letters state that you are a carer.

If your surgery doesn't have a carers' register, ask them to set one up, explaining how it will help staff to be aware of your and other carers' needs.

Your GP and primary care team provide valuable support, advice and information. This may include:

  • arranging home visits to you or the person you care for
  • arranging appointments for you and the person you care for at the same time
  • supplying repeat prescriptions to be delivered to your local pharmacy
  • putting you in touch with other sources of support and advice, such as the social work department and local voluntary agencies
  • providing supporting letters and information for benefits or for your local housing department or blue badge scheme

Your local authority has responsibility for arranging services that help you take a break from caring. This is done through a carer's assessment.

As a carer, it is your right to have an assessment. After your assessment, if your local authority agrees you have needs, they will arrange services to help you.

As well as breaks, this may include any help that would maintain your own health and balance caring with other aspects of your life, such as work and family.

To find out more, contact your local authority to ask for an assessment for the person you care for, and you as the carer.

Your local authority will also have information on voluntary organisations and specialist providers of respite services (see below). 

A break from daily routines and responsibilities is important, especially if you care full-time because you are retired or don't work and are with the person you care for 24 hours a day.

Breaks from caring are often called 'respite care'. This care can vary from a few hours' break to a longer holiday. You may want to go away alone, or there may be the chance to go with the person you care for on a holiday where care is provided.

Time off from caring responsibilities can be vital. Respite care can help both you and the person with Parkinson's. It allows you both to have a break, and perhaps to socialise with other people.

Respite can be given in a variety of ways, including:

  • a social services care worker, or someone from a charity such as Carers Trust, coming to your home to care for the person with Parkinson's. This can be occasional or frequent
  • the person you care for spending some time at a day centre, providing you with time to do your own thing
  • the person you care for having short, perhaps regular, stays in a care home
  • trips or holidays together with the person you care for

You can find out more about respite care and how to apply for financial help or services from:

A healthy diet and regular physical activity are as important for you as a carer as they are for the person you care for.

Exercise does not need to be too strenuous. Even a regular walk can help.

It may help to talk to a physiotherapist. They can advise you on care of your own body, most importantly your back, as well as prevention of harm to the person for whom you are providing care.

Some of our local groups hold group physiotherapy sessions and exercise classes for people with Parkinson's and their carers.

Adjusting to being a carer

"Sometimes you suddenly realise how things have changed. That people always ask 'How's Ron?' They never ask 'How are you?' or 'How are you coping?'"

Watch our short video to hear about Elizabeth's experience of caring for someone with Parkinson's.

Last updated December 2013. We review all our information within 3 years. If you'd like to find out more about how we put our information together, including references and the sources of evidence we use, please contact us at [email protected]