Caring for someone after a stroke: a guide for families

Summary: Caring for someone after a stroke is often about helping without taking over, following the rehabilitation plan and knowing which tasks need professional guidance. This guide explains what families can safely do, how to communicate, what support carers can ask for and when it may be time for more help at home.

One day, someone you love is in a stroke unit with a team around them. The next, they may be home and you're the person trying to remember the medicines, therapy instructions and what to look out for.

You want to help, but it isn't always clear what you should do yourself and what needs to be left to the stroke team. This guide explains how you can help safely, where you may need guidance and what to do if caring is becoming too much to manage alone.

How a family's caring role can change after a stroke

A stroke can turn a partner, son, daughter or friend into a carer very quickly. You may suddenly be helping them get around, organising appointments, watching for changes and trying to keep their spirits up, all before you've had time to think of yourself as a carer.

Your support can really help their rehabilitation and wellbeing, but you aren't expected to take the place of the stroke team. Family and friends can be an important part of recovery, while the healthcare team should give the person a recovery plan for home covering therapy, equipment and ongoing support.

Before trying to manage everything, make sure you know who to contact, what the current therapy goals are, and whether there is a written plan for medicines, mobility and swallowing. It also helps to ask which changes the team wants you to report and when the next review will take place.

If the person has only recently left hospital, our guide to what happens in the first days after a stroke explains the hospital stage. Our separate guide to stroke recovery at home covers rehabilitation, recovery times and home adaptations in more depth.

How families can safely support stroke recovery at home

Families can help by following the plan from the stroke team and encouraging the person to do as much as they safely can for themselves. That might mean giving them enough time to get dressed, make a drink or find the words they want to say, rather than stepping in too quickly.

This is a useful way to think about where your role ends and professional help begins.

• Help without automatically taking over. If it is safe and in line with the rehabilitation plan, allow time for the person to attempt everyday tasks for themselves. Ask whether they want help before stepping in.
• Follow the agreed exercises and activities. Use the instructions provided by the Physiotherapist, Occupational Therapist or Speech and Language Therapist. Ask what can be practised between sessions and how much support you should give.
• Keep the day manageable. Stroke can affect energy and concentration. A familiar routine, planned rest and one task at a time may make daily life easier. Follow any advice the rehabilitation team has given about pacing.
• Keep a note of any changes. Write down changes in walking, speech, swallowing, mood, eating, drinking or tiredness. This will make it easier to explain what has been happening at the next review.
• Keep the person involved. Include them in decisions and ask what matters to them.

A useful question to ask the stroke team is: “What should we encourage at home, and what shouldn't we try without you?” You will then have advice based on this person's needs, rather than general tips that may not be right for them.

Which parts of caring after a stroke should be left to professionals?

It can be tempting to learn as you go, especially when someone needs help straight away. But swallowing, medicines, exercises and safe ways to move are all areas where getting it wrong could cause harm. Make sure someone from the stroke team has shown you what to do first.

Swallowing and eating after a stroke

A stroke can cause swallowing difficulties, sometimes called dysphagia. If a Speech and Language Therapist has said that food or drinks need to be prepared in a particular way, or that the person needs to sit in a certain position, follow that advice exactly.

Contact the stroke team, GP or Speech and Language Therapist if the person coughs or chokes during meals, their voice sounds wet or gurgly after swallowing, food is left in their mouth or eating becomes unusually tiring.

Moving, transfers and falls

Helping someone move between a bed, chair, toilet or bath can cause injury if you haven’t been shown how to do it safely. Ask a Physiotherapist or Occupational Therapist to demonstrate the right method and explain what to do if the person falls. If they do fall, don’t attempt to lift them from the floor yourself, as this could cause or worsen an injury and put you at risk too. Instead, seek medical advice about what to do next. In some circumstances, an ambulance may be needed to assess the person and help them up safely.

Medicines and rehabilitation exercises

Keep an up-to-date medicine list and follow the instructions you have been given. If a dose is missed, you think a medicine may be causing a problem or anything is unclear, ask the pharmacist, GP or stroke team what to do.

Only help with exercises chosen for that person by their rehabilitation team, as trying to follow a general exercise video does not take account of their balance, pain, tiredness or other health problems.

When changes after a stroke need medical advice or emergency help

When you’re caring for someone after a stroke, it can be difficult to know whether a change is part of their recovery or something that needs medical attention. You aren’t expected to make that judgement alone.

Call 999 if you think it could be another stroke

Call 999 straight away if the person develops any sudden signs of a stroke. Do this even if the symptoms improve or disappear.

FAST does not cover every possible stroke symptom. Other sudden signs of a stroke can include weakness or numbness on one side of the body, blurred vision or loss of sight, difficulty finding words, confusion, dizziness or falling over, a severe headache, nausea or vomiting.

If you think the person may be having a stroke, call 999 straight away.

Contact the stroke team, GP or NHS 111 if something has changed

Not every change means another stroke, but it is still worth asking for advice if something is new, getting worse or making daily life more difficult.
This could include:

• Coughing repeatedly while eating or drinking
• Having more falls than usual
• A noticeable change in mood
• Tiredness that is stopping the person from managing everyday activities
• A change in speech, movement or swallowing that has not come on suddenly

Contact the stroke team or GP if you know who is overseeing that part of their care. If you are unsure who to speak to or how quickly they need help, call NHS 111.

Get advice after a fall involving a head injury

If the person hits their head during a fall, what you should do depends on their symptoms. Call 999 if they cannot stay awake, have a seizure, develop new weakness or have problems with walking, balance, understanding or speech.

Contact NHS 111 if they take blood-thinning medicine, have vomited, feel dizzy or you are worried about them. The NHS explains more about when to get help after a head injury.

How to communicate when a stroke has affected speech or understanding

Conversation is often easier if you turn down background noise, keep your language straightforward and give the person plenty of time to answer. What helps will depend on how the stroke has affected them, so ask their Speech and Language Therapist which approaches work best.

Aphasia can affect how someone uses or understands language, while dysarthria affects the muscles used for speech. Neither means that the person's intelligence has changed.

• Get their attention first. Turn off background noise and face the person so they can see you.
• Keep one idea in each sentence. Use ordinary adult language, but make the information easier to process.
• Allow time for an answer. Try not to finish sentences, correct every word or move the conversation on too quickly.
• Use more than speech. Writing, pictures, gestures, pointing or communication aids may help.
• Check what has been understood. Yes or no questions or a choice between two options can be easier, but avoid pretending to understand when you do not.
• Speak to the person, not around them. Include them in decisions and conversations about their own life.

A Speech and Language Therapist can help you find ways to communicate that suit the person's particular needs.

How family carers can protect their own wellbeing after a stroke

When someone you love needs you, looking after yourself can easily slip to the bottom of the list. But if caring is starting to affect your health or take over the rest of your life, that is a sign that you need more support too. It does not mean you care any less.

Signs that you may be trying to manage too much include:

• Regularly losing sleep because of caring or worry
• Developing back pain or another physical problem because of the care you provide
• Missing your own appointments, meals or medicines
• Feeling unable to leave the house, even for a short time
• Losing touch with friends, work or activities that matter to you
• Feeling angry, low, anxious or unable to cope most days

If any of these feel familiar, start by thinking about what would make the next few days easier. Rather than asking someone for general help, give them a specific job. They may be able to sit with your relative on Tuesday, collect a prescription or bring over a meal.

It is also worth telling your GP surgery that you have caring responsibilities. They can record this on your medical record, take it into account when supporting your own health and may be able to point you towards help in your area. If you are regularly feeling low, anxious or unable to cope, speak to your GP about how you are feeling.

A local or online stroke support group can also put you in touch with people who understand what daily life after a stroke can be like. Sometimes it helps to speak to someone who does not need the whole situation explained from the beginning.

What support can family carers ask for after a stroke?

If you regularly look after someone because they are ill or disabled, you are an unpaid carer, even if that isn’t how you think of yourself. Support is available for you as well as the person who has had the stroke, and you don’t need to wait until you are struggling to cope before asking for it.

These are four useful places to start:

Ask for a Carer’s Assessment and check financial support

A Carer’s Assessment is a conversation about how caring affects your health, work, relationships and time for yourself. Anyone aged over 18 can ask their local council for a free Carer’s Assessment.

The council may suggest practical training, help so you can take a break or services in your area. The assessment itself is free, although any help provided afterwards may be subject to a financial assessment.

You may also qualify for Carer’s Allowance if you spend at least 35 hours a week caring and the person you look after receives a qualifying disability benefit. The rules for Carer’s Allowance also cover your earnings, education and where you live, so check the current criteria before applying.

When home care could make things more manageable after a stroke

You may start thinking about paid care when helping with washing, dressing or moving safely is becoming too much, the person cannot be left alone for long, you need to return to work or caring is affecting your own health.

Bringing in care doesn’t mean handing everything over. It can simply mean having help with the parts of the day that are becoming difficult:

• Visiting care at home can provide help at particular times, such as getting up, washing and dressing, preparing meals or taking medication.
• Live-in care may suit someone who needs a consistent Caregiver in the home and regular support throughout the day.
• Respite care can provide short-term support when you need a proper break, have other commitments or are temporarily unable to provide care.

Whatever type of care you choose, it should fit around the advice from the NHS team. Rehabilitation and recovery support at home can help the person continue with agreed routines and exercises while their rehabilitation remains led by the appropriate healthcare professionals.

External references

• NHS: Recovering from a stroke
• Stroke Association: Swallowing problems after stroke
• Stroke Association: Tips for aiding communication
• Stroke Association: Find stroke support near you
• NHS: Symptoms of a stroke
• NHS: Head injury and concussion
• NHS: Carer's Assessments
• GOV.UK: Carer's Allowance eligibility

Unique Senior Care is a regulated provider of live-in and visiting care. This article provides general information and does not replace advice from the stroke team, GP or other professionals involved in the person's care.