Caring for someone after a stroke

Coping in the early days

Stroke is a sudden and serious condition and can come as a shock. Suddenly seeing a loved one unwell can be very upsetting. You might not understand what has happened or may find it difficult to know how to support them.

It is natural to feel overwhelmed, but as you come to terms with what has happened, you might want to know how you can help. Here are some ideas:

• Start by talking to the medical team. Ask them to explain what has happened and clarify anything you do not understand.

• Ask the medical team whether there are any small ways in which you can assist with your loved one’s care. As time goes on, ask the rehabilitation team to show you ways to provide support between therapy sessions. This could mean helping your loved one re-learn skills, or practising therapy exercises together.

• Focus on one day at a time. Recovering from a stroke is a gradual process. Encourage and motivate your loved one as much as possible.

• Keep hold of useful information and contacts. Your needs can change over time, and you may find it is helpful in future.

• Remember to look after yourself. Take breaks, get some exercise and plenty of sleep, and plan regular healthy meals.

You can find more information in our PDF guide A carers guide to stroke.

Carer’s assessment

If you are, or are thinking about becoming a carer, you have a right to have an assessment of your needs. This is called a carer’s assessment. You are entitled to an assessment and to receive help even if the person you care for refuses help.

A social worker, or another professional nominated by the local authority, will carry out your assessment. They will look at your role as a carer and the effect it has on you. The assessment will establish how much caring you do (or will do) and how that affects other areas of your life such as work, training or leisure activities.

You can ask for the assessment before you start caring, or at any other stage if you have already started being a carer.

Financial impact

If you’re caring for someone you may be faced with higher heating bills and costly equipment or home alterations. Your loved one may have had to give up work because of their stroke, or you may be considering giving up work.

Carer's Allowance

If you become a full-time carer, you may be entitled to claim Carer’s Allowance. If you care for someone for at least 35 hours a week, you may be eligible.

Home alterations

Your local authority can arrange for someone (usually an occupational therapist) to assess what aids or adaptations would make life easier at home, such as grab rails or ramps.

If major adaptations to their home are needed, the person can apply for a Disabled Facilities Grant. This is available through local authorities in England, Wales and Northern Ireland. In Scotland, you can apply to the local authority’s Scheme of Assistance for help with repairing and adapting housing if you have a disability

The benefits system is complex so seek specialist advice about what you are entitled to and help with filling in claim forms.

Find more information in our guide: Benefits and financial assistance.

Looking after yourself

Caring for someone is a huge responsibility. It is realistic, not selfish, to think carefully about taking care of yourself. If you don’t look after yourself, you risk becoming stressed or exhausted and this could also affect the person you are caring for.

When your loved one first comes home, keep a diary for a week. This may help you establish what help or support you need. Social services should review the situation from time to time to see whether your needs have changed, but if your situation changes, ask for a review straight away.

It’s important to recognise if you’re feeling tired or depressed. Taking regular breaks is crucial. This might involve having a few hours to yourself every day or arranging more formal respite care. Try to organise the day so that you have at least a little time to yourself. Ask family members or friends for help with specific tasks, if you need it. You may also want to find a local carers’ support group to meet others in the same position as you.

Many carers can feel socially isolated. Try to keep in touch with others. While some friendships may fade away, you can build up new ones with people who share your interests. Stroke clubs and carers’ groups can be a good starting point.

Support in your area

A carers’ centre or organisation can offer advice, information and practical support in your area. You can find their details by contacting our Stroke Helpline, social services, your GP, or the hospital where the person you are caring for was treated after their stroke.

Information guides

• Download A carer's guide to stroke (PDF)

• Download Supporting a stroke survivor (PDF)

Where to get help and information from the Stroke Association

Helpline
Call us on 0303 3033 100,from a textphone 1800 0303 3033 100
Email: helpline@stroke.org.uk
Our Helpline offers information and support for anyone affected by stroke, including family, friends and carers.

Read our information
Call the Helpline to ask for printed copies of our guides.

Other sources of help and information

Age UK
Advice line: 0800 169 65 65
Scotland: 0800 12 44 222
Wales: 0300 303 44 98 or advice@agecymru.org.uk
Northern Ireland: 0808 808 7575 or advice@ageni.org
Provides useful advice and information for older people, including benefits and advice for carers.

Jargon Buster
A plain English guide to the most commonly used social care words and phrases and what they mean.

Carers Direct
Helpline: 0300 123 1053
Ask your question using webchat or get help by email and ask if you need a translator. Cares Direct is an NHS helpline for carers. Helpline and webchat open: Monday to Friday, 9am to 8pm and weekends, 10am to 4pm.

Carers Trust
Information, advice discussion and support for carers.

Carers UK
Phone: 0808 808 7777
Offers information and support for carers, including information about finances and benefits.

CareZone
CareZone makes it simpler to take care of yourself and your family. Keep everything organised and easily coordinate with the people that matter to you.

Citizens Advice
England: 0800 144 8848
Wales: 0800 702 2020
Scotland: 0800 023 1456
Northern Ireland
Citizens Advice is a free advice service that can help you deal with a wide range of issues. They give benefits advice and can help you fill in the claim forms. To find details of your local Citizens Advice branch, their advice line number and open door sessions visit their website or look in your local telephone directory.

Office of the Public Guardian (England and Wales)
Phone: 0300 456 0300
Email: customerservices@publicguardian.gov.uk

Office of the Public Guardian (Scotland)
Phone: 01324 678300
Email: opg@scotcourts.gov.uk
Offers support for those who lack capacity or would like to plan for their future, they also have information on becoming a Power of Attorney.

Office of Care and Protection (Northern Ireland)
Phone: (028) 9076 3000
Email: opg@scotcourtsni.gov.uk
Offers support for those who lack capacity or would like to plan for their future.

Court of Protection (England and Wales)
Phone: 0300 456 4600
Email: courtofprotectionenquiries@justice.gov.uk
Offers information on becoming a deputy.

Disclaimer: The Stroke Association provides the details of other organisations and apps for information only. Inclusion on My Stroke Guide does not constitute a recommendation or endorsement.