When someone close to you has had a stroke, they may need help and support after they return home from the hospital. This guide outlines some ways you can support a stroke survivor, and explains what help and support is available for carers..
Being an informal care-giver
An informal care-giver is someone who provides unpaid help and support to family or friends. There are many different ways of being a care-giver. You might not even want to call yourself a carer or care-giver, and that’s fine. You’re still someone’s husband or wife, daughter, brother or friend, doing what you can to help.
If you’re regularly taking time to give help and support to someone, whether it’s a few hours a week or full time, you need to think about your own needs too.
Types of informal care after a stroke
Most people need some support after a stroke. They often need more care in the early days, as the fastest period of recovery happens in the weeks and months after a stroke. But recovery can continue for years, and there is no set time limit.
Even a mild stroke can mean that someone needs time and support to start feeling better and manage their fatigue. After a more serious stroke, many people are left with lasting effects like difficulty walking or communicating. See our ‘Quick guide to the effects of stroke later in this guide.
After hospital care and therapy have ended, the person will still be recovering in many ways. By using the skills they’ve relearned during therapy in daily life, they can continue to gain independence and increase in confidence.
The support or care you give a stroke survivor can take many forms. It can include practical help with shopping, cooking or taking medication. It can also mean giving emotional support such as a regular chat on the phone, or helping someone fill in a form. You could help someone communicate, read or write. You may be supporting them to manage anxiety or memory problems.
Becoming someone’s main carer: the hospital discharge process
It’s often a family member or partner who takes the main responsibility for supporting someone after a stroke. Before they leave hospital, the stroke team will work with family and professionals to create a plan for the care they need when they leave, and assessing long-term needs. This process is called discharge.
Some people can have ‘Early Supported Discharge’ (ESD) which allows them to leave hospital soon after a stroke, and continue to have the medical care and therapy at home that they would have been receiving in hospital. If someone needs more care after a stroke, they may be transferred to another hospital or a rehabilitation unit for a number of weeks. After this, they will go back home or into residential accommodation.
Can I choose how much care I give?
If you’re in a situation where you may need to become someone’s main carer, or take on more caring responsibilities, you’re entitled to find out what will be involved.
You have a right to be part of the discharge process if you’re likely to be the main carer. You can contact the stroke team and request a meeting with the multi-disciplinary team (MDT). This will bring together all those involved in planning care for the stroke survivor. It’s a chance for you to ask questions, and explain any concerns you have about being a carer.
If you feel that you can’t manage some of the things you’re being asked to do, or don’t wish to do any, you can say so. You don’t have to give reasons, but it’s a good idea to talk to the professionals involved. This can help them understand your needs as well as the person with a stroke.
There may be a practical solution. For example if you have a physical condition that makes it hard for you to lift someone, an adapted bathroom can help the person with a stroke use the shower and toilet independently.
You should not be asked to provide care at the cost of your own health and wellbeing, such as back pain due to lifting, or being unable to go to your own medical appointments if you can’t leave the person alone.
What if I’m a care-giver and also have care needs?
It’s not unusual for people to be informal care-givers for each other, such as husband and wife helping one another with taking medication or communication support. If the person who’s had a stroke was helping you manage a disability or health condition, you may find that you need some more support for yourself.
You can get your own care needs assessed to make sure you receive the support you need. Your partner can also have their needs as a carer assessed.
When you’re in a caring role, things often change over time. You may find that your own needs change, or that you can’t keep up with the work involved. The needs of person you’re caring for may also change, and they may begin to need more help. For some people, moving into sheltered accommodation or residential care could be an option.
The care needs assessment and carer’s assessments set out the kind of help you and the person with a stroke need.
You can ask for a care needs assessment, or a review of the care plan, at any time by contacting your local authority adult social services team. You can also ask for a carer’s assessment for yourself.
Young people and children often get involved in caring in different ways, such as helping adult carers in the household or supporting with communication. Find out about support available to young carers from the Carer’s Trust.
The emotional impact of stroke on family and friends
Taking on caring responsibilities is a big decision. It’s often something people do as part of a relationship, and they see it as a natural thing to do. But caring can be challenging, and it takes time and energy. Caring can take its toll, and carers tell us that they sometimes feel overwhelmed, exhausted and isolated.
A stroke can affect the way someone behaves and it may be hard to communicate, so they can seem different from the way they were. You might feel a sense of loss at the changes in the person and your relationship with them. Although they are still the same person, they might have changed in some ways such as being more emotional, or seeming less motivated to do things.
A stroke can have a huge impact on the whole family. It is common for someone who has had a stroke to feel quite low on returning home and to need a lot of encouragement and emotional support. They may have less control over the small, everyday things many of us make without thinking, such as getting out of bed, taking a shower or phoning a friend, and this can be difficult to cope with.
Within a family, people’s roles might change. Your family routines could change, and you might need to spend time doing caring activities that reduces your time with other family members.
You may also be feeling under pressure from things like finances, work and other caring responsibilities. Or you may have care needs or a health problem of your own, and feel concerned about how you’ll cope. Often, carers are also dealing with other areas in their lives, such as women going through the menopause while working and supporting older children and family members.
For someone whose close family member, partner or spouse is unwell, there can be feelings of loneliness and isolation.
As time goes on, your emotions can change. Some things will become easier to deal with over time, and it can help to talk about it. Our free online tool My Stroke Guide lets you chat with other carers about stroke and caring.
What to do about the emotional impact of caring
It’s important to look after your general wellbeing. For some practical ideas about things you can try, read our tips for looking after yourself below.
The carer’s assessment is there to identify the kind of help you need, and it can help you access support. The stroke survivor can have a care needs assessment to look at the support they should be getting.
Seeking some individual advice for yourself about practical and financial matters might help you feel more in control.
If you have social networks like family and friends, try letting them know you need support. It could be a cup of coffee or a video chat. Sometimes just knowing that someone else cares is enough to make a difference.
But if you find that your mood is affected, and you often feel very sad or anxious, contact your GP to ask about talking therapies or other treatments.
Changes to intimate relationships
A stroke can also affect the intimate relationship between spouses or partners, including changes to your sex life.
Stroke can affect intimacy for people of any age, gender or sexuality, for single people as well as couples. For example, a single person looking for a relationship might need to regain some lost confidence before going back to dating.
Partners might not be able to do things together like before. If someone behaves or reacts differently to things after a stroke, it could change how people relate to each other. It can also change things between partners if one person needs more support than they used to.
Many people have questions about sex after stroke, and it’s not something to be embarrassed about. Intimacy and sex make a big difference to your quality of life. So if you have any questions or worries, try asking for help.
The stroke nurse can answer your questions, and your GP can help with treatment for physical and emotional changes affecting your sex life.
Caring for someone is a big responsibility and can be overwhelming. It is realistic, and not selfish, to think carefully about taking care of yourself. If you don’t look after yourself, you risk becoming stressed or unwell, and this could also affect the person you are caring for.
Practical tips for self-care
You can register as a carer with your GP. This can help you get some support, such as referring you for help from services like checkups, mental health support and information about support services, health and wellbeing.
Keep a diary: when someone returns home after their stroke, they or you could keep a diary for a week. This can help to identify any unmet support needs.
Mind your back: if you need to help someone move around, a nurse or occupational therapist can show you safe techniques for moving someone without straining your back.
Relaxation: relaxation techniques can help with tiredness or stress. Your local carers’ centre may offer classes, or a stroke nurse might be able to give you advice.
Stay active: try to include some movement and activity in your daily routine. There are indoor exercises like yoga and fitness routines available online. And getting outside for a walk and some fresh air when possible. Being active will increase your energy levels, help you sleep better and can help improve low mood.
Check your mood: if you’re managing all your responsibilities and trying to keep going, it can be easy to miss the signs of fatigue and stress in yourself. If you notice signs like feeling very low or anxious, having trouble sleeping or being tearful, it could be a sign to get help for yourself. This could mean speaking to your GP who can refer you to local support services or give treatment.
Many people find that speaking to other carers is helpful. You can meet other stroke carers on our free, online self-management tool mystroke.com, or look for a local carers group.
Take a break: it may be difficult, especially if you’re a main carer, but taking breaks or getting help with some of your tasks is important. If it’s possible, try to organise your day with regular time to yourself. If you can’t go out or have a long break, you could try to fit in ten minutes of yoga or mindfulness. A Carer’s Assessment should offer services like respite care to allow you a rest or a break.
Eat well: try to eat regular meals and drink plenty of water. It can be difficult to fit cooking and food shopping into a hectic schedule. But having a healthy diet will help you stay well, and can also help with mood and energy levels.
Stay in touch: try to keep in touch with friends and family. Friendships can suffer after a stroke, especially if you find it hard to go out to socialise. Use technology to help you keep in touch with others. Video calls can work with two people or a group, so you could have a chat with a group of friends or family.
Don’t be afraid to ask for help if you need it. People around you may be able to do some practical things like shopping, or spend time with the stroke survivor.
Tip: join a group. The Stroke Association has a network of support groups. Many groups offer a virtual option for meeting others, so you can often join from home.
A carer’s assessment looks at the impact that caring has on your life, and what support you might need to help you in your caring role, and improve your wellbeing. You are entitled to an assessment and to receive help, even if the person you care for refuses help. You don’t have to be living with them, and you don’t have to be a full-time carer. The carer’s and care needs assessment can be carried out together, if you both agree to this.
It’s carried out by the local authority adult social services department. It’s done by a professional such as a social worker, therapist or charity worker. 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 you. This included your wellbeing, mental and physical health. Other aspects of life are looked at, such as being able to work or train, maintain your social networks, look after children and do leisure activities. The local council should be able to tell you more about what they can do to help you plan for an emergency.
Before your assessment, think about the impact of caring on your life, and what kind of support you might need. There is a checklist of things to think about before your assessment and more advice is available from Carers UK.
Care needs assessment
A care needs assessment, or community care assessment, looks at the care needs of the person who’s had a stroke. It’s carried out by the local authority adult social services department. If someone is leaving hospital, a care needs assessment might be arranged as part of the discharge plan, but you can request one at any time.
The assessment is carried out by a social care professional, often an occupational therapist or social worker. They look at the support someone would need to achieve certain goals, including eating properly, using the toilet and seeing family and friends.
A care plan is agreed with the person being assessed. The plan could be about accommodation, such as adaptations to make your home safer like installing a wet room. It could suggest carers or home help, and opportunities to socialise such as a day centre. It could also include a personal alarm to call for help.
Paying for care
The council has a duty to meet the needs of someone needing care. Care is not free, and the council carries out a means test to decide how much someone should pay towards their care. Your income and savings must be below a certain level to get council funding.
Types of care
If the person is eligible for council funding for homecare, they can use care services arranged by the council, or decide to get direct payments and arrange their own homecare.
These services may help with personal care (for example, getting in and out of bed, bathing, dressing), daycare, meals on wheels and respite care. They often involve carers coming to your home to help with specific tasks.
If someone is assessed as needing a temporary stay in residential care, their assets are calculated in a way that assumes you’ll be returning to your own home. If they need a permanent move into a care home, the value of the home might be included in the means test. It’s ignored if a partner or dependent is living there, and other rules also apply.
The NHS may pay a contribution towards nursing care or health costs, if someone meets the criteria for NHS Continuing Healthcare.
Respite care (sometimes called short breaks) is designed to give carers a break. It could be:
Care at home from a trained care assistant or volunteer, for a few hours a week.
Care outside the home, for example, at a day centre or social club.
Longer breaks (from days to weeks) in a residential or nursing home.
Respite services vary widely, so ask your local authority about what is available in your area. Services may be provided by the NHS, social services, and voluntary or private organisations.
Get individual advice
The rules about funding for care, including respite care, are complex, and it’s a good idea to get independent advice from a specialist agency. The charities Independent Age and Age UK provide individual advice and support.
Many services including benefits and funding applications are now done mainly online. Medical appointments, therapy sessions and care assessments may be given via video calls. So it’s really useful to have access to the internet, either using a mobile data service or home broadband.
If you can’t use an online service or video call for any reason, make sure you let the service know what you need such as a telephone call, letter or in-person appointment.
Getting access to technology
If you have a digital device like a mobile phone or laptop and would like some help with using it, contact your council about local support. Advice and individual support is available from accessible technology experts AbilityNet at abilitynet.org.uk.
There are some low-cost broadband and wifi offers available for people on low income or benefits.
Caring for someone can affect your income, and you might have higher costs for things like heating or home equipment and adaptations. If the stroke survivor was working and had to spend time off work, or can’t go back to work, it can seriously affect household income. Visit stroke.org.uk/work for information about work after stroke.
Changing your work hours
Sometimes carers cut their own working hours or leave work to spend more time with the person they are supporting. If you are thinking about changing your work patterns, you have the right to ask for flexible working hours if you’ve worked for an employer for more than six months. Working from home and flexible working has become more common since the pandemic began, and your employer may be open to a request.
To help you think about your options and ways to manage the financial impact visit the Carer’s UK website carersuk.org/work-and-career.
If you have to give up work, check what help you are entitled to under your work pension scheme (if you have one). If you are not working or claiming Carer’s Allowance, you may be able to claim Carer’s Credit to help protect your state pension.
Benefits such as Universal Credit, grants and loans are available to help people on a low income. The benefits system is complex, so seek specialist advice about what you are entitled to and help with filling in claim forms.
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. For information on how to apply, contact a carers’ organisation or visit a carer’s centre.
If you have a break from caring, such as if someone you care for goes into temporary residential care, or your earned income goes above the threshold, you need to report a change in circumstances to the Carer’s Allowance Unit.
The amount of recovery someone will make and the amount of time it takes varies. The biggest improvements usually take place in the early weeks or months, but recovery may continue for years. The hospital stroke team will support the person to become mobile from 24 hours after their stroke, and they should have treatment and support to help them make the best recovery possible.
Depending on the type and extent of the stroke, some people make an almost full recovery. Some people recover enough to be able to do many of the things they did before, but may perhaps require some support. Some people will have lasting disabilities which may impact their ability to live in their own homes independently. In these cases, they may require care at home or if their needs are greater, residential or nursing care.
Effects of stroke
A stroke can have a wide range of effects on the body, senses and communication. It can also have hidden effects, such as fatigue and emotional changes. The impact of a stroke depends on how large the stroke is, and where it happens in the brain.
Tips to help someone with their recovery
Many carers ask us how they can help the person they are caring for to recover.
Ask therapists if you can be involved in rehabilitation.
Encourage the person to take on family responsibilities right from the start. You may need to find new roles that are manageable to help to boost their confidence and maintain their relationships with other family members.
Try not to be overprotective. It’s natural to be cautious, but with advice from therapy professionals and the right equipment, someone with a stroke can regain independence. Encourage them to do as much as they can, right from the start.
Be patient. Things can take longer after a stroke. They may be relearning some basic skills. Listening and replying can take them longer, and it might take longer to respond to a request to do something. Fatigue can make it harder for them to join in with activities. They may have lost confidence, and be reluctant to try new things. Having vision loss could make them reluctant to go out. They might also seem uninterested in their old hobbies. These changes are due to stroke damage in the brain.
Be positive. Recovering from a stroke is a slow process and so your praise is needed for every sign of progress, however small. Reassure the person that you are caring for that things can get better, especially when progress seems slow.
Rehabilitation and recovery don’t only happen during therapy. Every time someone does an activity like communicating, walking or writing, it helps to repair some of the connections inside the brain that allow the person to relearn skills. You can learn more about how the brain ‘rewires’ those connections in our information on neuroplasticity.
After a stroke or transient ischaemic attack (TIA), by law, the person must not drive for a month. Going back to driving depends on the type of stroke, and what kind of driving licence they hold.