Looking after yourself as a carer
This information looks at how you can make sure you are taking care of yourself and your wellbeing while you support someone with Parkinson’s.
Thinking about yourself may be the last thing on your mind as you support someone with their Parkinson’s. But it’s important to look after your own health and mental wellbeing too.
Making sense of your feelings
It’s normal to experience a mix of emotions as you adjust to their diagnosis, along with the change and uncertainty it brings.
At first, you might not even be sure how you’re feeling. Your feelings will change over time, as you understand more about the diagnosis and think about how their Parkinson’s may progress.
- Feelings of isolation and uncertainty, where you’re not sure where to turn or how you’re going to cope with the situation.
- Denial, where you find it hard to accept the situation, or feel it isn’t fair.
- Fear about the future or worries about practical things, including your finances and care needs.
- Sadness or depression.
- Anger, where you may question why this is happening to you, or feel it isn’t fair.
- Confusion, or feelings of loss or grief, about the changes to your relationship such as, any plans you had and what you expected life together to be like in the future.
- Guilt, where you may feel you should be doing more for the person you support, or worrying that you’re more concerned about the effect on your own life.
- Frustration and wondering whether you could be doing more for them.
- Overwhelmed where you may feel that you’re having to cope with so much.
Coping with change
It can be difficult if you and the person with Parkinson’s are at different stages in coming to terms with the diagnosis. One of you may wish to face it and gather the information you need to get on. The other may not feel ready to. And that’s normal.
Dealing with change can take time. You may need support to:
- understand and come to terms with Parkinson’s
- live with the changes it might bring to your personal relationships, relationships with others and your working life
- manage the stress Parkinson’s may create.
Recognising the signs of depression
Supporting someone with Parkinson’s can be challenging, and it’s common for this to impact your own mental health. Seeing the impact of Parkinson’s symptoms on someone you care about, and their increasing need for help and support, may make you feel helpless at times. It could even alter your mood. So it’s important to look out for stress, anxiety and depression, and to get support if you need it.
Depression may come on slowly and the symptoms can be complex. So it may take time for you to recognise the early signs. This can mean that someone else notices things aren’t quite right and suggests that there’s something wrong.
Depression may interfere with your work, social and family life.
Symptoms can include:
- continuous low mood or sadness
- feelings of hopelessness, helplessness and guilt
- feeling tearful
- low self-esteem
- lacking motivation
- having little interest in things you used to enjoy.
If you think you might be depressed, speak to your GP who can refer you to further help if necessary. You may also wish to contact our helpline on 0808 800 0303. Our trained advisers can provide emotional support and information.
Taking care of your own health
Thinking about your health may be lower down on your list of priorities. This can be the case whether a diagnosis is recent or you’ve both been living with Parkinson’s for some time.
If you’re busy supporting someone with Parkinson’s, taking care of yourself and your own health needs will help you to continue to have a good quality of life. This will benefit both of you, and help you to support them well.
You can prioritise your own health needs by making sure you attend your regular check-ups and screenings.
Eating well and healthily can be a challenge when you’re supporting someone with Parkinson’s. But it’s important for both of you to eat a healthy, balanced diet.
If you’re providing physical support for someone, be aware of your own abilities and get support where you need it. If their symptoms are more complex, you may need help to lift or move them, for example.
Ask your GP, district nurse or an occupational therapist for advice 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.
Mental health
Following a Parkinson’s diagnosis, you’re likely to feel an impact on your own mood and emotional health. It can leave you feeling lost because you feel the needs of the person you’re supporting should come first. These feelings may come up over time too.
So from the start, and as their Parkinson’s progresses, try to take some time out of your day to look after your own mental wellbeing.
You may feel that putting them first is the right thing to do at the moment. But taking care of yourself and having a good quality of life means that you’re better able to offer support when it’s needed.
Here are some ideas to help you start thinking about ways you can take care of your own mental health.
- Try to take a break when you need it. Keeping your social life as normal as possible and doing things you enjoy can help you recharge your batteries. Accepting support from others is important too. Read our information on respite care.
- Talk to other people. Join online support groups, forums or check what is available to you locally.
- If you’re still working, speak to your employer. Find out what support they may offer you. This may be flexible working opportunities, specific leave arrangements (paid or unpaid), access to advice and information (a staff website or support network) or an employee assistance programme, if available where you work.
- Don’t shut off from family and friends. They will hopefully be there to support you where they can.
- Help yourself to relax. 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.
Physical activity
Being physically active can help improve your mental and physical wellbeing. It can give you some time away from your supporting responsibilities.
Being active is also beneficial for the person you support. It can help to manage symptoms of Parkinson’s. So finding types of physical activity you can do together can benefit you both and help them not to feel left out.
Depending on your level of fitness, there are lots of activities you can do, including walking, cycling, dancing and swimming.
You may want to spend some time doing what you enjoy with the person you support, or have some time on your own.
Finding ways to stay active can benefit you in many ways, including:
- improving your confidence and self-esteem, especially from the social benefit of being active with others
- helping your brain work more efficiently, so you can learn
- and remember more
- reducing feelings of anxiety and depression, and increasing happiness – especially if you can be active outdoors
- increasing your energy levels and giving you better sleep
- lowering your stress levels and blood pressure
- reducing your risk of developing other health problems, such as heart disease, stroke, diabetes, osteoarthritis, dementia and some cancers
Getting enough sleep
It’s important to sleep well, although it can be difficult if the person you support has sleep problems or needs care overnight.
People with Parkinson’s can be more likely to have insomnia because of the symptoms of the condition, such as tremor, stiffness, pain and restless legs syndrome. Disturbed sleep can also be a direct symptom of Parkinson’s without these other symptoms. It can also be linked to Parkinson’s medication.
Sleep and night-time problems are very common among carers of people with Parkinson’s too. These sleep disturbances may lead to an increased risk of depression and stress.
It may be difficult sometimes, but it’s important to have good sleeping habits. This will help improve your health, wellbeing and general quality of life. Talk about this with your GP. You can also ask them for advice on helping the person you support with any sleep problems linked with their Parkinson’s. Be sure to raise any night-time care issues at your carer’s assessment.
We have lots of information on the difficulties people with Parkinson’s may have with their sleep, why they happen and what can help. This information applies to you as well as the person you support. Read our information on sleep and Parkinson's.
Support from your GP
Along with your Parkinson’s specialist or Parkinson’s nurse, your GP will be a crucial part of your support team.
Register as a ‘carer’ with your GP surgery
When you let your GP know that you’re supporting someone with Parkinson’s, you may be entitled to extra support. This includes things like flexible appointments.
You may not feel that the word ‘carer’ best describes the support you give. But registering as a ‘carer’ is the way to let your GP know. It may help you get the support and access to services you need to help you look after them, as well as your own wellbeing.
Some GP surgeries have a carers’ register or database. If you’re on this, you’ll be given special consideration because you’re supporting someone with Parkinson’s.
Many GP surgeries use this register to:
- give you access to appointments quickly if you need them and help to get the services you need at the right time. This is so that you don’t have to tell everyone, every time, about your caring responsibilities
- give you up-to-date information about events for people like you who are supporting someone with a condition
- offer appointments for more appropriate times
- make sure any hospital or clinic outpatient appointments and admission letters state that you’re a carer
- offer free flu vaccinations.
Other types of support from your GP
Your GP can provide other forms of valuable support, advice and information, including:
- arranging home visits for you, and the person you support
- arranging appointments for you both at the same time
- supplying repeat prescriptions to be delivered to your local pharmacy.
When you talk to your GP, be honest about your needs, your feelings, and what you think would help.
Making the most of your own GP appointments
- As soon as you notice an issue, book an appointment. This helps make sure any problems are managed as effectively as possible.
- Prepare for your appointment. Keep a diary of how you (and the person you support) have been, your feelings and any issues that have come up.
- Make a list of things that you want to talk about. Keep the list short and put things in order of importance.
- Be honest about your needs, your feelings and what you think would help.
- If you’re not feeling confident, take someone with you like a friend, for example. Having someone else with you can help you to remember what is said. Making notes can help too.
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Further support and our helpline
As a carer, you can get support, claim benefits and access services that can help you care for yourself and the person you support. Read our information on getting support as a carer.
The Carers UK website has free useful information on looking after yourself while supporting someone. Visit the Carers UK website.
Our helpline is a free confidential service providing support to anyone affected by Parkinson’s. You can call our helpline on 0808 800 0303.
Our trained advisers, including specialist Parkinson’s nurses, provide information and advice about all aspects of supporting someone with Parkinson’s.
"Looking after yourself is so important"
Elaine supports her partner David who has Parkinson’s. She describes how she looks after herself and gets support from others.
"Caring is constant, even the little things. I never sit down at a table in a cafe first for example, it’s me that gets the coffee. I am always considering David. It’s difficult to take that time for yourself, but looking after yourself is so important."
This content will next be reviewed within 3 years of that date. 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]