Relationships after brain injury - Headway (PDF)

This booklet has been written for brain injury survivors and the people with whom they have relationships. It describes how relationships can be affected following brain injury, offers tips for managing relationships, and gives information on where to seek professional support from. the brain injury association Relationships after brain injury  Headway – the brain injury association Bradbury House, 190 Bagnall Road Old Basford, Nottingham NG6 8SF Authors: Tamsin Ahmad, Publications and Research Manager, Headway – the brain injury association and Dr Giles Yeates, Clinical Neuropsychologist and Couples Therapist. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted by any means, electronic, mechanical, photocopying, recording or otherwise, without prior permission in writing from the copyright owner. ISBN: 978-1-873889-82-4 © Headway – the brain injury association, 2017. published by n Relationships after brain injury Many thanks to the brain injury survivors who kindly consented to sharing their stories in this booklet. acknowledgements This e-booklet is an adaptation, created in August 2017, of the Headway print booklet Relationships after brain injury and may contain minor updates to the original version.  2 3 3 5 7 9 12 12 13 14 15 16 18 19 21 21 22 23 24 25 28 30 31 33 1 n Contents Headway – the brain injury association n Introduction........................................................................ What are relationships?.................................................... How brain injury can affect relationships....................... n Emotional and behavioural effects.................................................. n Physical effects.................................................................................... n Cognitive effects................................................................................. Types of relationships and how they are affected after brain injury................................................. n Couple relationships.......................................................................... n Children................................................................................................. n Other family members........................................................................ n Friends................................................................................................... n Work colleagues................................................................................. Impact of changed relationships..................................... Role changes...................................................................... New relationships.............................................................. n Meeting a new partner....................................................................... n Telling a new partner about your brain injury............................... n Relationships and risks...................................................................... Sex and sexuality............................................................... Tips for managing relationships...................................... Professional support......................................................... Conclusion.......................................................................... Useful organisations......................................................... About Headway..................................................................  n 2 n Relationships after brain injury Introduction R elationships are a very important and intimate part of life. They give us a sense of security and wellbeing, and contribute towards our sense of self-identity. It is often our closest relationships that provide the vital emotional and practical support needed when hardships are faced, such as when a brain injury occurs. For some people, the emotional, behavioural, physical and cognitive changes after brain injury can have an impact on existing and future relationships. There are a number of ways in which this can happen and a number of different outcomes. Some relationships may strengthen, whereas others may become strained over time or even completely break down. This booklet has been written to offer information and advice on this complicated and sensitive topic. It offers information on how relationships can be affected after brain injury, the impact this can have, and what can be done to help relationships that are strained. Useful organisations and sources of support are listed throughout the booklet, and a list of relevant contact details can be found at the end. Remember that you can ring the Headway helpline to discuss any of the issues in this booklet. The helpline can offer information and emotional support on different aspects of brain injury. To contact the helpline, call 0808 800 2244 or email [email protected].  3 n Headway – the brain injury association n What are relationships? How brain injury can affect relationships relationship is a connection that people share with one another. When we think about the people we have relationships with, we often consider our immediate and personal relationships, such as those we have with our family and partners. However, a relationship is a connection that we have with anyone who is significant in our lives or who we see on a regular basis. We can therefore also have relationships with friends, work colleagues and neighbours. O ur brains are specialised in connecting with others through social relationships. There are a number of specific brain structures that are responsible for processing the emotional and social skills that form the basis of all relationships: l The limbic system, insula and cingulate – this is a group of brain structures that are collectively responsible for generating and processing emotions of self and others. l The frontal lobes – this part of the brain is responsible for managing emotions and behaviour through a number of cognitive (thinking) skills such as motivation, planning, making decisions and inhibiting behaviour, collectively known as the executive function. Parts of the frontal lobe are also involved in anticipating other people’s emotions and monitoring one’s own behaviour accordingly. A  n 4 n Relationships after brain injury The temporal lobes – parts of the temporal lobes are involved in thinking about things from another perspective, focusing on the same thing as others in a group situation, and keeping social rules and conventions in mind. l The brainstem – this part of the brain is responsible for reflex emotions, including social reflexes such as smiling, as well as basic functions such as breathing and sleep/wake cycles. l  5 n Headway – the brain injury association n When the parts of the brain that are responsible for processing emotions and behaviour are injured, the brain injury survivor may struggle with, or no longer have the skills that are needed to make relationships work successfully. The injury itself is like a boulder crashing into a lake, and the impact on all relationships is like the ripple from the splash radiating out to involve many of those in the brain injury survivor’s social network. These challenges can cause significant distress for both the survivor and the people with whom they have relationships, and may increase as time passes following the injury. Emotional, behavioural, physical and cognitive effects can all have an impact on relationships. The following section describes in more detail how common effects of brain injury can affect relationships. Emotional and behavioural effects Common emotional and behavioural effects of brain injury that can affect relationships include depression, mood swings, inappropriate emotions, problems with managing anger and lacking empathy. Depression A brain injury survivor experiencing depression may find it more difficult to engage in social situations; indeed, they may stop socialising altogether. Depression can also cause tiredness and lethargy, which may affect the survivor’s interest in social activities, especially if fatigue is already an issue. Family, partners and friends may try to offer support, but this might be resisted,  n 6 n Relationships after brain injury causing relationships to become strained. Sexual relationships can also be affected, as the survivor may lose their interest in sex. More information on this topic is available in the Headway factsheet Depression after brain injury. Mood swings It might become difficult for people to maintain positive relationships with a brain injury survivor whose moods are unpredictable. The brain injury survivor themselves may find it frustrating when others are unable to understand how they are feeling, and this may cause further problems in relationships. Inappropriate emotions Emotions that are inappropriate to the context may be displayed by some survivors, for instance laughing if they are told bad news. This can cause embarrassment in social situations and people may stop socialising with the survivor in order to avoid such situations. Partners and family members in particular may struggle if the survivor’s display of inappropriate emotions occurs regularly and appears insensitive. Managing anger Anger is often directed to those nearest to the survivor, such as family members and partners. This can have a serious impact on relationships, especially if the anger leads to recurring arguments. Families, partners and friends may become anxious about triggering the anger, and the survivor may in turn feel negatively about their loved ones during periods of anger outbursts. Children may become fearful of a parent who frequently becomes angry, especially if the parent did not have an angry temperament before their injury. More information on this topic is available in the Headway booklet Managing anger after brain injury.  7 n Headway – the brain injury association n Lack of insight A brain injury survivor may no longer be able to understand and appropriately respond to how others are feeling, and their behaviour may seem distant. For example, the survivor may fail to recognise when a partner is upset and therefore not understand that they are expected to provide comfort and support. Or they may not realise that if they have upset a friend, the appropriate response would be to apologise. The survivor themselves may feel quite confused about what to do in these instances but choose to keep this confusion to themselves. Physical effects Common physical effects of brain injury that can affect relationships include mobility problems, communication problems, sexual dysfunction, hormonal problems, pain, fatigue and facial injuries. Mobility problems Mobility problems, such as dizziness and balance problems, can make it difficult for people to socialise in crowded environments. The brain injury survivor may find that they are spending less time with friends than they did prior to their injury, and their social network may start to dwindle. A child’s relationship with their brain injured parent may be affected if the parent is no longer able to engage in physical play with them, such as through sport. Mobility problems might make it more difficult for the brain injury survivor to engage in sexual activity with their partner or spouse; sex may therefore turn into an activity that needs to be planned, or even become impossible, taking away the spontaneity and enjoyment.  n 8 n Relationships after brain injury Communication problems We use communication to express how we are feeling about things, find out how others are feeling and discuss day-to-day things that we think are important. Some people develop problems with their speech or word retrieval after brain injury. Depending on the severity of the problem, families, partners and friends might find it difficult to understand the brain injury survivor, and more effort may be required to have basic conversations. For more information on this topic, see the Headway booklet Coping with communication problems after brain injury. Sexual dysfunction Various effects of brain injury can result in sexual dysfunction; this is discussed in more detail in the section Sex and sexuality. Hormonal problems Injury to the hypothalamus and/or pituitary gland of the brain can cause hormonal problems in some brain injury survivors. This can lead to a range of issues such as depression, sexual difficulties and mood swings, among other things, that may affect relationships. More information on this is available in the Headway factsheet Hormonal imbalances after brain injury. Pain Pain can be experienced anywhere in the body following brain injury. It might be experienced occasionally, regularly or all the time. This can make it difficult for the brain injury survivor to engage in day-to-day activities. They may no longer enjoy activities or socialising with friends if they are in pain. Sexual activities may become altogether impossible. Family members and partners may find it distressing if they are not able to comfort the survivor with the sensation of touch.  9 n Headway – the brain injury association n Fatigue Brain injury survivors experiencing fatigue may struggle with committing to and attending social get-togethers, which may make them feel fatigued for hours or days afterwards. Family activities may need to be shortened, reorganised or rescheduled to accommodate the survivor’s new routine. It might become difficult for the survivor to spend long periods of time with people, especially children who often demand high levels of energy. For more information on this topic, see the Headway booklet Managing fatigue after brain injury. Facial injuries If a brain injury survivor has been in an accident, they may have visible injuries to the head or face. This could include scarring to the face, indents to the skull or facial disfigurements. Family members and partners may struggle with the change in physical appearance. Children may not understand why their parent looks different and might be frightened, depending on their age. If the facial injury is very apparent, it might become more difficult for the brain injury survivor to find a partner. Cognitive effects Common cognitive effects of brain injury that can affect relationships are memory problems, problems with attention and concentration, executive dysfunction and lack of insight. Memory problems Memory problems after brain injury may cause someone to forget key dates such as birthdays, or social commitments such as meeting a friend for lunch. Other people may misinterpret this forgetfulness as being neglectful. For example, friends who do not see the survivor regularly may not realise how memory  n 10 n Relationships after brain injury problems affect the survivor on a day-to-day basis. More information on this topic is available in the Headway booklet Memory problems after brain injury. Attention and concentration It may be difficult for the brain injury survivor to attend to, or concentrate on things for sustained periods of time, for instance, following a conversation in which lots of people are involved and the topic is changing quite rapidly. This may appear to others as though the survivor is disinterested. Executive dysfunction Executive dysfunction can make a brain injury survivor impulsive, unpredictable or unable to make appropriate decisions. This may affect their ability to socialise, as decisions about social behaviour are often complex, and many people rely on ‘gut-feeling’ and intuition to assess whether a behaviour is appropriate or inappropriate in a certain social situation. Without these skills, a brain injury survivor may struggle with social problem-solving. These issues are also likely to alter a person’s personality and this may have an impact on existing or future relationships. Families, partners and friends may feel like the person is no longer who they once were and question whether they will ever be the same again. More information on this topic is available in the Headway factsheet Executive dysfunction after brain injury. Lack of insight A brain injury survivor may not be aware of the changes that their brain injury has resulted in, including their social behaviour. This is not a case of denial, but rather the survivor does not recognise the change or does not attribute it to their injury. This can lead to frustration and arguments within the family network as the family  11 n Headway – the brain injury association n tries to explain the nature of the survivor’s problems, while the survivor is unable to recognise it. More information on this can be found in the Headway factsheet Lack of insight after brain injury.  n 12 n Relationships after brain injury T his section offers information on how brain injury can have an impact on the different types of relationships that many people have in their day-to-day lives. Couple relationships Relationships between partners are one of the most commonly affected types of relationships after brain injury. Both partners often feel a strong sense of commitment to the other, especially after a life-changing event has occurred, such as one partner sustaining a brain injury. Couples usually spend a significant amount of time together, and so the brain injury survivor’s partner is often aware of the effects of the injury, including ‘hidden’ effects. Further, in supporting brain injury survivors, partners often take on caring roles. This can lead to the boundaries between the roles of ‘carer’ and partner becoming blurred. If the survivor’s personality has changed, the partner may feel that they are no longer the person they originally chose to be in a relationship with, resulting in feelings of confusion, longing, sadness and loss. The survivor themselves may no longer feel the same way about the relationship as they did prior to the injury. However, enduring challenging experiences like this can also, with support, strengthen some couple relationships. Types of relationships and how they are affected after brain injury  13 n Headway – the brain injury association n More information on this can be found in the Headway factsheet Brain injury: a guide for couples. Case study “Sheema and I had been married for just three months at the time of the incident.... My mood swings put enormous pressure on our marriage. The effects of my brain injury have been unbelievably tough on Sheema, but she has taken our vow of ‘in sickness and in health’ very seriously.” Dave – to read more of Dave’s story, visit the My Story section of the Headway website. Children The reaction a child will have to their parent sustaining a brain injury will depend on a number of things such as the child’s age (and their ability to understand the consequences of their parent’s injury), their temperament, the type of relationship that they had with the parent prior to the injury, and the way in which the injury has affected the parent. Relationships between some parents and their children may strengthen. Children can also offer a potential contribution to their parent’s recovery, if supported in an appropriate manner. However, it can also be quite common for the child to feel distant and confused about the relationship, especially if the parent has changed. More information on this can be found in the Headway booklet Supporting children when a parent has had a brain injury.