The information on this page covers issues that specifically relate to partner relationships. For more general information on how relationships can be affected, visit Relationships. For further guidance on being a carer, visit Looking after someone with a brain injury.
How partners are affected by brain injury
Brain injury can cause a range of effects that can change the way the survivor thinks, feels or behaves. It can also affect their skills and abilities. Partners often spend a lot of time around the survivor and may therefore be more affected by the brain injury than other relatives or friends. There may also be unique challenges that couples experience following brain injury, such as changes to their roles and sexual changes.
On this page, we cover some of the ways that partners may specifically be affected by brain injury and offer tips for coping.
Changes in communication
Your loved one might have problems with word-finding, understanding information or producing speech. They might also struggle with understanding and using non-verbal communication such as body language and facial expressions. Day-to-day discussions can become difficult, and there may be frequent misunderstandings. It might take your partner more time and effort to make themselves understood. They might also struggle with expressing romantic feelings.
Such communication problems can be difficult for both of you, and you may find yourselves getting frustrated or communicating less over time. Learning ways in which to cope with communication difficulties can help, especially as communication is an important part of relationships.
Refer to our guidance on Communication for further information.
Changes in personality
Many people report feeling like a ‘new person’ after their brain injury. The effects of brain injury can cause an overall change in the brain injury survivor’s sense of self or their personality, which is very often noticed by the partner as they may spend more time around the survivor than others. Sometimes, the partner may notice the changes more than the survivor themselves, who may be unaware of the changes - this is known as lacking insight.
Changes in personality can cause difficulties in a relationship. You may feel that you are no longer in a relationship with the person you initially chose to be with. Some survivors might also have changed feelings towards their partner. Going through a catastrophic life event such as a brain injury can be incredibly difficult for anyone. Your partner’s personality might be different due to the recent experiences they have had, and it might take time for them to process everything that they have been through and overcome any trauma associated with it.
Changes in intimacy
Intimacy can be described as an emotional, physical and psychological closeness between people that is often accompanies by romantic feelings. It provides security and satisfaction for many couples. It can be sexual, but not always, as intimacy can also refer to acts such as hand-holding, kissing and holding one another. A brain injury can affect the intimacy between a couple in a number of ways. Visit Sex and sexuality for more guidance on this topic.
Changes in behaviour
Changes in behaviour after brain injury are common, especially following an injury to part of the brain called the frontal lobe. Behaviour can become uninhibited and socially inappropriate, such as swearing or making inappropriate comments in public. This might cause you to feel embarrassment, frustrated or saddened.
Your loved one might also make sexually inappropriate remarks or engage in sexually inappropriate behaviour, which can be particularly distressing for you.
A lack of motivation might affect your loved one's ability to engage in activities. As a result, your social life might be affected and you might, in turn, feel depressed, isolated or frustrated.
Changes in cognitive ability
Cognition refers to our ability to learn, think, remember and process information. These skills are commonly affected after brain injury. Memory problems are particularly common, and can affect relationships if, for instance, your loved one cannot remember significant dates such as your anniversary or birthday. They might also struggle with remembering day-to-day plans such as appointments and planned outings.
You might find yourself having to repeat things several times, offer reminders and be responsible for planning and organising things far more than you did before the injury. Problems with setting goals, multi-tasking, decision making and problem solving are collectively known as executive dysfunction. These can also cause practical and emotional challenges.
Practical changes
Your loved one might be unable to work or drive after brain. You will likely need to adjust aspects of your life to accommodate for these changes. There might also be a change in the type or frequency of activities that you do together. For example, fatigue might make it harder for your loved one to socialise, or there might be certain places they are no longer able to comfortably visit due to noise levels.
If you previously relied on a joint income and your loved one is no longer able to work, you might need to consider applying for welfare benefits.
Role changes
Practical changes can cause yours and your loved one's roles to change. For instance, you might need to take on new responsibilities that your loved one previously did, such as managing household finances. This can be stressful, as you will likely be having to manage these new responsibilities alongside other aspects of your life. However, it will probably also be difficult for your loved one to adjust to this change, and their self-esteem might be affected if they are no longer able to do tasks that they did before their injury.
Many partners report feeling less like a romantic partner and more like a carer if they are required to support the survivor with aspects of daily living such as washing and dressing, which can also be a difficult change in role to accept and adjust to.
If there are children in the family, you may find that your partner's parenting role also changes. This can be a difficult thing for everyone to adjust to. More guidance on this is available on Children.
Changes in capacity
A brain injury can impair a person’s ability to make decisions for themselves. If a person lacks capacity to make decisions, you may take on the role of deputy so that you can make decisions on their behalf in their best interests. Applying for deputyship, becoming a deputy or making alternative arrangements can be a lengthy, complex and stressful process. More guidance on this topic is available on Mental capacity.
Nigel and Paula's story
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Before my injury, I was pretty lively. I was a photographer and filmmaker. I used to work in London and commute weekly to Exeter. I suppose I was always: get out there and get it. I was firmly convinced that photography and filmmaking were the things I was doing.
That was how we met, at a photographic club. It was a portfolio evening, “Ask the Experts”, with Nigel being the expert and me being there. I’d only got into photography quite recently. I used to be a dentist.
I was introduced to Paula and I thought, “She’s nice.” We just got on really well, loved photography and liked having adventures together. She’s gone on to become much more than nice. She’s very special.
We were going to do this business together. We’re both photographers. I was setting up a newborn photography business, and we agreed that he was going to do the back-office graphics and editing, while I’d be front of house and take the pictures. We were in a great place. We’d just decided that was what we were going to do, and the following day I got a call at the bus stop. Kaboom. End of that plan, anyway, and lots of plans.
Oh yes. I was meeting my daughters and going to my granddaughter’s, and going to the cinema. I was standing at a bus stop. Beyond that, I have no idea, because I woke up in hospital.
When the ambulance phoned me, they thought he’d taken an opioid overdose. I went to hospital. He was in intensive care and he was unconscious. They didn’t know what was wrong with him. After about, I don’t know, seven or eight days, they sent him home.
I had a broken husband who didn’t work. He didn’t know how to shower. He had memory loss, spoke very quietly in a very little voice, couldn’t read and couldn’t use his mobile phone. When I got him home, I tried to get him to line the Scrabble letters up in order because I couldn’t believe he couldn’t read. Absolutely everything changed instantly.
It’s like running into a brick wall. As I became more aware of what was going on around me, I became more and more aware of what I’d lost. That was terribly depressing, to suddenly realise that you can’t do this and you can’t do that.
When he’d had his stroke and came out of hospital, he could walk, but his balance wasn’t right. He put the trolley back and then walked back towards me, coming towards the car, and he just veered off. He’s got huge issues with balance. You adjust, you do what you can, and he has got a lot better. But life’s never going to be like it was before.
We do a lot of cycling together and he was keen to get back on his bicycle. He recovered massively in three months. I mean, going from not knowing what to do in the shower to getting back on his bicycle within three months was pretty amazing.
Oh yes, and that has been incredibly aided by having a fantastically understanding and supportive wife. I’d never have done it without Paula.
You have to. He’s got to do stuff. It’s our life, and we enjoy doing stuff. We enjoy our adventures, so it’s like, “Come on, come on. You can do it. You can do it.”
Everything has to be very structured and logical. I follow Paula’s instructions. She gives me logical instructions and I follow them. It’s occasionally kind of disastrous because I follow them to the letter.
I’m forever telling him what to do. You’ve got an end point at a certain time, and you’ve got to give instructions to get there. Otherwise, he’ll go around in circles, doing everything in the wrong order.
Headway has been extraordinarily helpful. To be able to come here, mix and meet people who all have the same background is absolutely marvellous, inasmuch as you don’t have to set any rules or baseline because everyone knows where we’ve all been. We’ve been through variations of the same experience.
You’ve got to stop trying to be the person you were. You can just be the person you are now, and you don’t have to mask the things you can’t do, or that you can’t speak as eloquently as you used to.
It’s been fabulous, hasn’t it, to meet a group of people and do stuff you love? It’s a big gang and everybody looks after each other. Nigel had a heart attack last year, and when we came back for the first time, they all stood up, cheered and clapped. It was amazing, the support.
That was very moving. They are the friends who have had similar experiences. As Paula said, this thing of us all being a gang, a group together, sharing these experiences and our lives, just makes life tolerable.
There is so much of life that, once you have a stroke, you suddenly lose. It’s like becoming disconnected from life. Coming to Headway, I’ve become connected. I’ve become connected to all these people and connected to Headway. It’s belonging again.
When you’ve had your life limited, talking about adventures, they have to be smaller now. Just cycling from where we live to a local farm shop, which we did yesterday morning, is a little adventure for us.
We love Cornwall. We love the surf. Bodyboarding we absolutely adore, going down to Cornwall and getting in the water whenever we can. This is something that Nigel has got back to since his stroke, which is quite amazing.
We went to Alaska. We sailed up the Inside Passage on one of the big ships, and that was fabulous, to go and see whales and the scenery. Nigel always wanted to see a big glacier, so for his birthday we did a helicopter flight and landed on the glacier.
We’d only been together for about three years before he had his stroke, so we didn’t have a huge amount of time to do things. We haven’t done masses of trips. We’ve done some. We went to Paris, didn’t we?
We did, yes. I got into a punch-up with a pickpocket.
I wasn’t too impressed.
We have lots of plans. We always have plans. How they will pan out is open to all kinds of things, but certainly taking the camper van and going camping in different places is something I’ve always wanted to do.
She looks so good driving a camper van. She looks like she’s on her way to a festival.
I’d love to do the whole of the UK, but it’s about being realistic. We need to do it in bite-sized chunks: a couple of nights away to start with and see how we get on. Hopefully, it will all work out well.
Inside here, I’m still me. It might be a slightly different me, but accept me. Take me for what I am, because we’re only ever here once and you have to live life absolutely to the full while you can.
Tips for couples
The way a couple manages their relationship will depend on the nature of the relationship, personality types and the effects of the brain injury. Different things will therefore work for different couples. The following general suggestions might be helpful ideas to consider to help with managing your relationship.
Learn about brain injury
Learn about the effects of brain injury, and talk to your partner about the effects they personally experience. Understanding this can allow you to offer the most appropriate support and find strategies to manage the effects together. You can find information on many of the effects and impacts of brain injury on Living with brain injury.
Ask your partner how they feel about you sharing information about their injury with mutual friends.
Remember that the effects of brain injury can fluctuate on a regular basis, for instance fatigue can be worse on some days than others. Try to recognise patterns, take time to ask how your partner is feeling each day and try to plan activities around this accordingly.
Communicate effectively
Let your partner know how you are feeling, and gently encourage them to share their feelings with you too. Do not assume that your partner will know how you are feeling without telling them, especially if they struggle with interpreting body language and/or facial expressions.
Consider asking your partner to express their feelings creatively, for instance through art, music or creative writing. This can be therapeutic for many people, and can also make it easier for some survivors to share feelings that they would otherwise struggle with expressing.
If your partner displays inappropriate behaviour, tell them gently but firmly to stop. This might be difficult, but it can help your partner to re-learn important social skills. Encourage other members of the family and mutual friends to do the same, and keep messages consistent. Consider whether your partner would benefit from applying for a Headway Brain Injury Identity Card to help in social situations.
Use clear and direct language to help your partner with understanding information if this is something that they struggle with.
Be patient with your partner; give them time to finish sentences and express themselves, even if they are talking slowly or struggling to think of a word.
Do not pretend to have understood your partner if you have not. Instead, repeat back to them information that you have understood so far and ask them to repeat themselves.
Visit Communication problems for more advice on communicating with a brain injury survivor who has speech or language impairment.
Make practical arrangements
Offer to help your partner with completing forms, or offer to attend assessments/appointments with them. Input from those who know the survivor well can often be vital, especially if the survivor lacks insight or has memory problems.
Where possible, try to balance responsibilities as a couple. Take on responsibilities that your partner is no longer able to do, and ask them to complete tasks that they can do safely. For instance, if your partner cannot remember the steps involved in cooking a meal, ask them to chop/prepare ingredients while you do the cooking itself.
Keep a clearly written reminder and record of planned outings or appointments, for example keeping a joint diary that the survivor checks everyday or a clearly visible calendar.
Don’t rush to do everything for your partner; let them try things for themselves if they can do them safely. This is an important part of rehabilitation, as they will need to challenge themselves at times to relearn skills.
Remember that having a brain injury does not stop someone from going on holiday. Consider disability friendly facilities and holiday packages that might be suitable for your partner’s needs. More guidance on this is available on Holidays and travel.
Be considerate to one another
Be considerate of the fact that this will probably be a stressful time for both of you. Try to be forgiving of behaviour that you know is a result of the brain injury.
Show appreciation for one another in small ways, such as saying thank you, writing notes or letters or buying small gifts for one another.
Respect your partner’s need for personal space. Remember that they likely will not have had much of this during their hospital treatment or rehabiliation, and they may value it more when they return home.
Arrange a date night or plan a special activity to do together. Choose something that accommodates for your partner’s needs. For example, if they struggle with loud noises and bright lights, they might feel uncomfortable going to the cinema and may prefer a movie night at home instead.
Be considerate of the anniversary of your partner’s injury. This will likely be an emotional time for both of you. Be sensitive to any changes in your partner around this time, and encourage them to speak to you or get emotional support if they need it. Do enjoyable and meaningful activities together
Celebrate achievements in your partner’s recovery. You might wish to do this by creating a journal or scrapbook in which you record their progress over time.
Help your partner to identify new hobbies or interests that you can do together, or encourage them to find things they can do by themselves. They could even consider volunteering for an organisation or a cause they are interested in or passionate about, which can be a very rewarding and fulfilling experience.
Get support
Encourage your partner to speak to their GP if they are experiencing ongoing effects of their injury.
Find out more about how we can help both you and your partner by visiting Supporting you.
Contact your local adult social care team if your partner needs support with activities of daily living (washing, dressing, etc) and you are unable to help.
If you feel that your relationship is struggling, consider getting professional support, for instance from a couple’s therapist. To access this type of support, you can contact local mental health services, speak to your GP, contact Relate or browse through the College of Sexual and Relationship Therapists directory.
You can find specific guidance on accessing support for issues relating to sex on Sex and sexuality.
Look after yourself
Remember that it is important for you to occasionally take time to relax by yourself. Even a few quiet moments to yourself every day can help.
Don’t forget that our services can support partners as well as brain injury survivors themselves.
Allow yourself to be honest about your feelings and work through these at your own pace. Consider getting professional support if you are struggling with your emotions, for instance through counselling.
If you are struggling with the role of caring for your partner, get advice and support from carer organisations. You could also explore the option of arranging respite care. More guidance on this is available in Looking after someone with a brain injury.
Catherine's story
"We were the most ordinary, happy family. Two kids at uni, one at school, my husband Alan ran his own sales business and I worked from home as a writer. But five years ago, on Boxing Day 2016, when Alan collapsed with absolutely no warning, our lives changed forever."
Find out more about Catherine's story, as well as her top tips for managing when a loved one has had a brain injury.
The information on this page was produced with expert support from partners of brain injury survivors.
This information was last reviewed in 2017.
The organisations listed on this page are provided for information purposes only. Their inclusion does not imply endorsement, recommendation, or approval by Headway. Users should make their own assessment of any organisation or service before engaging with them.
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