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Carers - looking after yourself

Beryl Rhodes and her husband playing poker

There can be many different stresses and strains when caring for someone with Parkinson's.

We try to look after Dad a few days each month, so Mum can have a break and see her friends and family

Jenny, whose Dad has Parkinson's

If you're busy caring for someone, it may be difficult to care for 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.

If you have a good quality of life, this will benefit you and the person you care for.

Share experiences with other carers

Talking to other people in a similar situation can help. You can connect with and chat to other carers on our 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.

Talking to other people in a similar situation can help.

Our Parkinson's local advisers provide emotional support and practical help for people with Parkinson's, their carers and families.

We organise events throughout the year specifically for carers of people with Parkinson's. Find out if there's anything coming up in your region or country.

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 in our real life stories section. And other carers share their experiences of caring for someone with dementia.

Your health needs

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 mobility 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.

You may find these publications useful:

Talking to your GP

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 a friend or advocate with you. Having someone else in the meeting can help you to remember what is said. Taking brief notes might help too.

You can read more about getting the most out of appointments in our Talking to your GP, specialist or Parkinson's nurse about Parkinson's information sheet.

Carers' registers

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

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, 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.

Primary Health Care Team

Your GP and primary care team provide valuable support, advice and information:

  • 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 such as Attendance Allowance or for your local housing department or blue badge scheme

Respite breaks and time off from caring

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

Carers' assessments

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.

When help is offered as a result of an assessment, your ability to pay for that help may also be assessed.

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

When help is offered as a result of an assessment, your ability to pay for that help may also be assessed.

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

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

Exercise and diet

A healthy diet and regular exercise 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.

You can read more in our Therapies and Parkinson's management section.

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