Sustaining a spinal cord injury can have major implications for not only the person sustaining the injury, but for those closest to them as well. It can mean uncertainty for all involved and require significant adjustments for you, your family and the people you care about.
Here, JMW focus on how you can understand the effect your SCI has on a family member
A spinal cord injury is likely to impact beyond the injured person, with the potential for roles and responsibilities to shift within the family. With this comes a change in the dynamics of relationships in your daily life, especially if someone within the family is taking on care responsibilities. Both you and your family members may struggle to understand how the other feels, which can lead to tension in relationships.
If you can, having open and frank conversations about how you are feeling can help address any problems as they come up, rather than ignoring them and allowing them to grow.
Suddenly having a family member sustain a spinal cord injury can cause a range of emotions, including anxiety about the future, the seriousness of the disability, and how the family are going to cope going forward. Feelings of sadness are common, both during the immediate aftermath of the injury, during the relatives stay in hospital, and following discharge home. It is also common for relatives to feel a degree of resentment towards the injured person, which in turn can lead to feelings of guilt.
It may feel like things are never going to be the same again, especially in the early stages after injury. But with the support of relevant professionals, family and friends, life can take on a new ‘normal’ and can be just as fulfilling as before. Whilst it can be forgiven focussing on what a person can no longer do, often in relation to work, parenting, intimate relationships, holidays, etc. it can also be an opportunity for a person, or the wider family, to assess their role and responsibilities and make welcome changes in life, whether that’s taking on more responsibility at home, changing career, or making plans for the future, spinal cord injury can have a positive impact.
If your relative has sustained a spinal cord injury, it’s likely they will spend a prolonged time in the hospital. During this time, it can be difficult to cope without them at home, and difficult to be encouraging and positive towards them and their rehabilitation. Some days may be filled with optimism about the future, whilst other days may feel like a backwards step and a struggle to see a positive future. It’s important to try to encourage your relative whilst remaining realistic about what is possible for you as the injured person, and the wider family.
Spinal cord injury can have an impact on even the simplest of daily tasks, so learning how to adapt to changes in daily activities can make life more manageable for the whole family. It will usually become apparent early on as to the extent of a loved one’s disability and the impact it will have on what they can do for themselves, and how, and what they will need help with. During their rehabilitation, they will likely be able to spend some time at home, including overnight stays. Alongside the assessment of healthcare professionals, this time will help gauge what changes the family might need to make to ensure a relative’s return to home is managed well. When it is not possible for a relative to return to the family home after spinal cord injury because the property is inaccessible and cannot be adapted, finding a new home can be a difficult and stressful situation.
Everyone experiences stress at some point in their life, and it’s highly likely that having a relative sustain a spinal cord injury will result in feelings of stress. Physical symptoms like loss of sleep, headaches, dry mouth, gastrointestinal problems or fatigue can all be caused by stress. Whilst you might feel anxious, overwhelmed, nervous or experience mood swings because of being stressed.
Whilst not always easy to talk to others about how you are feeling, especially if you feel you don’t want to burden others with your problems, it can help if you can share your feelings with a trusted friend/colleague/relative. There are also excellent organisations that can help. The Back Up Trust run a family support service that connects family members new to spinal cord injury, with family members of spinal cord injured people who have lived with the condition for a while and can offer an empathetic ear, as well as insightful information and advice on how to cope with everyday life.
There are also practical things you can do to help you alleviate the impact of stress. Writing down what is causing you stress and prioritising their importance can give you a sense of control and a plan going forward. Taking regular exercise and finding ways to relax (reading a book, taking a bath) can help empty the mind of stressful thoughts. Eating a healthy, balanced diet will ensure energy levels are kept high and you maintain a healthy immune system, whilst avoiding alcohol and caffeine (especially in the evening) and replacing these with a milky drink can aid better sleep.
Stress can manifest in different ways; the following emotions are common in times of stress:
Feeling anxious in response to traumatic and life-changing events is common and is a natural way to respond to stressful situations. Anxiety can make you feel fearful, panicky and apprehensive, and can impact the way you view a situation compared to how you would feel about it if you were calm. You may experience a loss of confidence and perceive an inability to deal with the impact of spinal cord injury, such as moving house, change in family responsibilities, or managing work. It’s important that you recognise what is causing you to feel anxious and find ways to deal with the underlying issues. Sharing the way you feel, and finding ways to relax can help you stay calm and in control.
Spinal cord injury impacts on every aspect of life, and with so much information to take in, unknowns to navigate, and important decisions to be made, it can leave you feeling helpless. The likelihood is your loved one with be in hospital for some time, giving you the opportunity to learn what you need to know, including where to access specialist information and advice. If your loved one is receiving rehabilitation in a specialist spinal injuries centre, staff can often be a great source of support with questions or concerns you may have. There are several organisations that can also help, many of these are listed at the end of this article.
Feeling sad following an injury to a loved one is entirely normal. Feelings of sadness are likely to fade with time as you learn more about your relative’s injury and how it will be managed in the longer term. Some people find it difficult to let go of these feelings and sadness can turn into depression in some cases. Common symptoms of depression include a sense of worthlessness, and helplessness, general loss of interest in life and the things you used to enjoy, loss of appetite and change in sleeping patterns. If these symptoms persist, speak to your GP for support and advice. Many of the specialist spinal centres provide counselling support to families too, as does the counselling service provided by Spinal Injuries Association.
It’s important feelings of sadness are acknowledged by friends and family, and speaking to a trained professional, such as a counsellor or psychologist can also help, as can speaking to other families who have been through similar experiences.
A sense of disbelief is an understandable reaction to a loved one’s spinal cord injury. If you have little prior experience of disability, it can be difficult to comprehend the impact on you and your loved one. You are likely to feel apprehensive about the future and how you will manage in the future. However, what can often seem like a very bleak situation is in fact much less so. Disabled people can access a wide range of support to enable them and their families to lead very happy, fulfilled lives. Attitudes towards work, travel, parenting, intimate relationships, etc. can often be wide of the mark, people with spinal cord injuries can achieve amazing things!
Children are not immune to the impact of a spinal cord injury, whether sustained by a parent, sibling or other relative. However, most children cope well with the situation and suffer no long-term effects.
Young children may find it difficult to understand the implications of a spinal cord injury and may feel a sense of loss when the injured person doesn’t come home, take them to school/nursey, or is unable to play with them. Whilst difficult to explain, it may be helpful to concentrate on what the injured person can do and introduce it slowly that way. This clip featuring Christopher Reeve on Sesame Street may be a useful resource.
Older children may have a similar understanding to adults, as they will see the physical impact and may be able to resource information in books/via the internet or ask questions about the injury.
Helping children cope can be difficult, especially if you are also experiencing feelings of stress and anxiety. A child’s ability to cope may depend on their age, their understanding of the injury, and what else is going on in their lives.
Allowing them to have regular contact through frequent visits to the hospital or by telephone and helping them to feel listened to will undoubtedly be a source of comfort to both them and their loved ones. Older children and teenagers may also find support by talking to other young people who have had a similar experience.
A SCI can affect relationships with the other people in your life, including friends and colleagues. Initially, it may be difficult to face seeing your friends as you process what has happened, but friends can often be an excellent source of support and provide an avenue to share your feelings and concerns. Some friends or colleagues may act awkwardly, sometimes distancing themselves from you because they don’t know what to say. Being unable to do the things you used to do with friends can be extremely difficult. If you can, talk to them about how you’re feeling.
Back Up Trust: the family mentoring service at Back Up can link trained volunteer mentors who are parents, partners, siblings and children of people with a spinal cord injury with those going through a similar experience
Spinal Injuries Association: counselling services are available to SCI people and their relatives. To book an appointment call SIA’s Support Line on 0800 980 0501
British Association of Counselling and Psychotherapy (BACP): BACP can provide advice on a range of services to help meet the needs of anyone seeking information about counselling and psychotherapy.
Mind: Mind offers advice and support to empower anyone experiencing a mental health problem. It has a network of local groups, offering specialised support and care based on the needs of the communities they support.
Relate: Relate is the UK’s largest provider of relationship and family counselling and sex therapy. It also offers other relationship support services, including books about staying together and recommitting to the people in your life.
Samaritans: Samaritans provide confidential, nonjudgemental and emotional support 24 hours a day for people experiencing feelings of distress or despair, including those that could lead to suicide.
If your injury was caused as a result of someone else being at fault, you should seek compensation to help pay for the additional support you may require, as well as any lost wages that you would have otherwise earned if not for your injury. Making a successful legal claim will allow you to secure these funds, and it is vitally important that you choose a solicitor with expertise in this area to represent you. The personal injury team at JMW are specialist in supporting clients who have sustained a spinal cord injury that wasn’t their fault, securing millions of pounds in compensation to help them get on with their lives.