Brain Injury can be devasting and completely lifechanging, we look at the emotional and physical side of living with Brain Injury and how it can affect loved ones. The implications of brain injury can be emotionally overwhelming and financially difficult to deal with, we can provide support services to families to help transition back into life afterwards.
An acquired brain injury (ABI) is an injury caused to the brain post birth. There are many possible causes, including a fall, a road accident, tumour and stroke. In the UK there is one person admitted to hospital every 90 seconds – that is about 350,000 people per year. It won’t surprise you to hear that 1 in 47 cases that the Charity supports involves brain injury. Males are 1.5 times more likely to be admitted for a head injury. With 85% of the electrical and energy industry male it’s time to address this issue. The effects of brain injury differ widely from person to person, depending on how severe the injury was and what parts of the brain were damaged. Any one patient’s condition will be made up of a mixture of these effects, in varying degrees of severity.
People with less severe injuries may spend a short time in a coma and may go quickly through the stages of rehabilitation and be back at work in a month or two. Those more severely affected are likely to still need care and treatment for a number of years after the accident. Fortunately, the brain seems to have a remarkable capacity for re-learning many skills that have been lost and even people with severe injuries can often make a reasonable recovery. The Charity will support those on a brain injury journey at all stages of the process, often when people don’t know where to turn to for support.
A brain injury can be devastating for both the individual and for their family and friends; lives can be changed in an instant.
The initial shock and immediate medical treatment following a brain injury will usually lead to a period of adjustment and rehabilitation. And it can be a lengthy process because it’s almost impossible to predict how far or how fast people will recover from their injury.
The scale and volume of issues that people are suddenly faced with can be overwhelming. Getting the right diagnosis, managing symptoms and accessing rehabilitation, finding support in the community, managing the emotional impact, dealing with financial and legal matters – the list is long and complex and places great demands on people at their most vulnerable.
One illness that really disrupts lives on a wide scale is cancer, and sadly it is one that is all too common. According to Cancer Research UK, incidence rates for all cancers combined are projected to increase by 2% in the UK between 2014 and 2035, to 742 cases per 100,000 people by 2035. There is a very high likelihood of any one of us knowing someone affected by cancer and this means we should all be aware of the impact it can have. After the initial shock, a person diagnosed with cancer must deal with the difficult reality of the treatment required, the painful symptoms that are synonymous with cancer, the worry and anxiety over what the future holds, plus long periods off work or away from family. In many cases this is also likely to lead to financial difficulties and mental strain, which can make it very difficult for the person and their family to cope. People have many different ways of easing the stress they are dealing with, such as hobbies and exercise, but in some instances the health problems are so severe that even these pursuits become impossible. Instead, a getaway can help sooth some of the turmoil going on in a person’s life, and that is why the Electrical Industries Charity (EIC) are raising funds for 39-year-old Zac, from Leeds.
Zac, who has been an electrician for 20 years, is married to 34-year-old Nichola and together they have three children. In 2016 Zac suffered a seizure and it was discovered that he had a large incurable brain tumour. Zac suffers with psoriatic arthritis in all his muscles and joints and has worked through the pain since he was 18, but now that he no longer gets exercise the pain is getting worse and he is suffering with atlantoaxial instability. Zac is having the three vertebrae at the top of his spine bolted together and then bolted to his scull which will reduce the 50% movement he has now to 0%. There are further health risks involved in this operation and once complete Zac will be looking down at his feet constantly.
Zac’s brain tumour was reduced in 2017 to 20% which left him with permanent memory loss issues and eyesight damage. He has epilepsy due to the tumour and this is only controlled by high dose medication. Sadly, in December 2018 following a brain scan, he found out that the remaining 20% had grown and it cannot be fully removed due to the location and brain damage, meaning chemotherapy and radiotherapy is required to help keep it at bay. This will cause more eye and brain damage with memory loss being the scariest part for the family. Zac now has difficulty remembering his wedding day and even his children’s names, and he is struggling to come to terms with the upset this is causing for him and his family.
Due to his health issues Zac has been unable to work for some time and this has created unimaginable cash problems, with bills mounting up and deductions from his family’s benefits to keep them on track. This has left them with very little money to spend on necessities like winter clothes for three growing children. With so much hardship in the lives of Zac and his family a moment of respite to help them forget their troubles, even briefly, could do them the world of good. EIC is therefore raising funds to pay for Zac and his family to go back to his Irish home town in the mountains of Wicklow. Zac and Nichola took the children there in 2014 for a two week holiday where they had an amazing time enjoying the countryside and all the rural charm it has to offer. Zac’s family have invited them to stay for as long as they like and EIC would like to help them fulfil this wish so they can all have some new moments of pleasure to savour in what has been an incredibly arduous few years.
Suffering a traumatic head injury is a terrifying ordeal, with serious implications for the way we live. Our brains are miraculous and mysterious things. Everything we are and do, everything we feel and believe, is the product of electrical signals in our neural pathways. When something catastrophic happens to our brains, such as a car accident, stroke or physical assault, our personalities become rearranged. Assault is the third most common cause of traumatic brain injury (TBI), after falls and road traffic collisions. TBI can lead to multiple long-term physical, cognitive and emotional problems, including post-traumatic stress disorder (PTSD). This was the case for James who was tragically assaulted outside a nightclub and sustained a minor brain injury, following a celebratory night out with his friends on his birthday. James was attacked from behind and struck with a fist in the side of his face/jaw. He lost his balance, hit his head on a wall, losing consciousness and falling and hitting his head and forehead above the nose on the kerb edge.
Approximately 1 million people per year attend UK Emergency Departments (EDs) with a head injury. Roughly 900,000 of these people will only have sustained a brief period of unconsciousness or no unconsciousness at all. While most such patients will be fine eventually, many will have sustained a minor brain injury. They may experience post-concussion symptoms for a number of days or weeks and a significant number will have persistent, long-term difficulties. Services to help these people are limited in most areas of the UK.
Following the assault, James was in and out of consciousness for 2-3 hours and had no recollection of being transported in the ambulance and his subsequent admission to A&E indicating post-trauma amnesia for less than 24 hours. James was diagnosed with post-concussion syndrome described as “a complex disorder in which various symptoms, such as headaches and dizziness last for weeks and sometimes months after the injury that caused the concussion” and fatigue.
Consequently, James suffered physical, cognitive and psychological problems, some of these symptoms were headaches, poor balance, difficulty closing his eyes, poor short-term memory and poor sleep. It is evident the assault was traumatic for James and it was affecting his daily functioning and mental wellbeing. The effects of moderate to severe TBI can be long lasting or even permanent. While recovery and rehabilitation are possible, most people with moderate to severe TBI face life challenges that will require them to adapt and adjust to a new reality.
Moderate to severe TBI can cause permanent physical or mental disability. Because polytrauma is common with moderate to severe TBI, many patients face additional disabilities as a result of other injuries. Even patients who appear to recover fully may have some long-term symptoms that never go away. Challenges with work and completing tasks that were once routine can be much more difficult than before the injury. Some patients find that the skills and abilities that they used before the injury to meet these challenges are not as sharp as they once were.
Through its Employee Assistance Programme (EAP), which is funded by powerLottery, the Electrical Industries Charity (EIC) provides people within the electrical sector with a wide range of support services to help them overcome any physical, emotional and financial challenges at hand. The charity sourced and funded the support of an occupation therapist who visited James and completed a functional and vocational assessment. The EIC were then able to assist James using the report from his assessment to recommend support options for his employer to consider in relation to the new environmental, psychological and cognitive demands James now required assistance with.
The EIC also arranged for James to attend therapy sessions focusing on trauma support and learning methods of coping with his experienced cognitive and physical changes. He found the therapy very supportive and the sessions have enabled him to manage his newfound experiences with everyday life better. James unfortunately has sustained a nasty scar from the assault above his eye which he will have to live with as a reminder of the traumatic event for the rest of his life, he is learning to cope with this everyday visual reminder and has said to the EIC
“Although dealing with my scar is an on-going issue that’s really never going to go away due to it being my eye line, the therapy sessions have helped me understand how to manage my anxiety and insecurities around it and my perception on how people see it and me”
“before my sessions with the therapist I was an unpracticable mess, my temper was short and my mood extremely low. I took this out on my friends and family, and I was not a nice person to be around. The therapy has enabled me to open up and we have walked through each of my issues step by step, I was then able to start to face my insecurities on my own in a positive way”.
In spite of James experiencing a traumatic event which has affected him cognitively, emotionally and psychically, he is improving and feeling stronger in himself – this is fundamental for the charity and our support objective and philosophy.
A traumatic brain injury interferes with the way the brain normally works. When nerve cells in the brain are damaged, they can no longer send information to each other in the normal way. This causes changes in the person's behaviour and abilities. The injury may cause different problems, depending upon which parts of the brain were damaged most.
There are three general types of problems that can happen after TBI: physical, cognitive and emotional/ behavioural problems. It is impossible to tell early on which specific problems a person will have after a TBI. Problems typically improve as the person recovers, but this may take weeks or months. With some severe injury’s changes can take many years.
Structure and function of the brain
The brain is the control centre for all human activity, including vital processes (breathing and moving) as well as thinking, judgment, and emotional reactions. Understanding how different parts of the brain work helps us understand how injury affects a person's abilities and behaviours.
The brain is made up of six parts that can be injured in a head injury. The effect of a brain injury is partially determined by the location of the injury. Sometimes only a single area is affected, but in most cases of TBI multiple areas have been injured. When all areas of the brain are affected, the injury can be very severe.
Most people with TBI are able to walk and use their hands within 6-12 months after injury. In most cases, the physical difficulties do not prevent a return to independent living, including work and driving. In the long term the TBI may reduce coordination or produce weakness and problems with balance. For example, a person with TBI may have difficulty playing sports as well as they did before the injury. They also may not be able to maintain activity for very long due to fatigue.Emotional/Behavioural Problems
Behavioural and emotional difficulties are common and can be the result of several causes:
- First, the changes can come directly from damage to brain tissue. This is especially true for injuries to the frontal lobe, which controls emotion and behaviour.
- Second, cognitive problems may lead to emotional changes or make them worse. For example, a person who cannot pay attention well enough to follow a conversation may become very frustrated and upset in those situations.
- Third, it is understandable for people with TBI to have strong emotional reactions to the major life changes that are caused by the injury. For example, loss of job and income, changes in family roles, and needing supervision for the first time in one's adult life can cause frustration and depression.
Brain injury can bring on disturbing new behaviours or change a person's personality. This is very distressing to both the person with the TBI and the family. These behaviours may include:
- Acting more dependent on others
- Emotional or mood swings
- Lack of motivation
- Acting inappropriately in different situations
- Lack of self-awareness. Injured individuals may be unaware that they have changed or have problems. This can be due to the brain damage itself or to a denial of what's really going on in order to avoid fully facing the seriousness of their condition.
Fortunately, with rehabilitation training, therapy and other supports, the person can learn to manage these emotional and behavioural problems.
Immediately following TBI, two types of effects are seen. First, brain tissue reacts to trauma and to tissue damage with a series of biochemical and other physiological responses. Substances that once were safely housed within the cells now flood the brain. These processes further damage and destroy brain cells, in what is called secondary cell death.
The second type of effect is seen in the individual's functioning. For those with more severe injuries, loss of consciousness (LOC) occurs at the time of trauma, lasting from a few minutes or hours to several weeks or even months. Lengthy LOC is referred to as coma. In such serious injuries, the first few days after trauma may also produce negative changes in respiration (breathing) and motor functions.
As an individual regains consciousness (those with the severest injuries may never do so), a variety of neurologically based symptoms may occur irritability, aggression and other problems. Post-traumatic amnesia (PTA) is also typically experienced when an injured person regains consciousness. PTA refers to the period when the individual feels a sense of confusion and disorientation - Where am I? What happened? - and an inability to remember recent events.
As time passes, these responses typically subside, and the brain and other body systems again approach physiological stability. But, unlike tissues such as bone or muscle, the neurons in the brain do not mend themselves. New nerves do not grow in ways that lead to full recovery. Certain areas of the brain remain damaged, and the functions that were controlled by those areas may emerge as challenges in the individual's life.
It has often been said that brain injury affects whole families, not just individuals. Many difficult stages have to be passed through from the initial shock of the news of an injury, to eventual acceptance that things may now be very different from how they used to be - for both the individual concerned and the whole family.
Living with a brain injury
Some would say that families are the real victims and often suffer more than the brain-injured person because they are more likely to have accurate insight into the problem. No family is ever prepared and ready for a brain injury; most families already have a full agenda of problems to cope with before clearing the decks to cope with the problems of brain injury. Research into the effects of severe brain injury on the other family members gives some indication of the extent of their difficulties. The following points are worth noting:The people in families and relationships who seem to cope best are those who have two special qualities:
- Firstly, they have the ability to be flexible, not being rigidly tied to how things ought to be but being able to embrace change and view it as a challenge.
- Secondly, they have the ability to communicate openly and honestly, directly expressing emotions both positive and negative and recognising the needs of themselves and others within the family. If a family has these characteristics of flexibility and open communication, then it is possible that, out of the crisis of brain injury, a family can grow in strength through its way of dealing with it.
The fragility of life can give a whole new perspective and intensity to the love that existed prior to the brain injury. Having a person with disability in the family often brings a new sensitivity and awareness to other members of the family. It is often said that the experience of head injury tends to make strong marriages and relationships stronger and troubled relationships more troubled.
Partners can often be affected if their spouse, boyfriend or girlfriend sustains a brain injury, as it can be very upsetting and frightening to have a loved one in hospital. In addition to this, they often have a good understanding of the personality, habits and emotions of their partner before the injury, and are therefore often aware of how their partner has changed afterwards.
The injury can also cause many practical changes to the couple’s life, which can have an overall effect on the relationship itself. Below are some of the common ways in which this can happen.
Adjustment to changes in life following a brain injury can be difficult for both the survivor and their partner. In addition to this, partners are often left with little or no support, despite often having to take on caring responsibilities. These changes can typically cause feelings of isolation, longing for the past and sadness. Acceptance for the new way of life can, however, set in over time, especially if the survivor continues to recovery or learns coping strategies to regain their independence. Indeed, some relationships strengthen over time as the couple learn new ways of managing the effects of the injury and their relationship.
Rehabilitation after brain injury is largely unpredictable as every injury is unique. This section gives an overview of the processes and timescales for recovery and rehabilitation, explains how families can assist in the process, and details where people can receive help and support.
Unlike most other cells in the body, brain cells do not regenerate when they are destroyed. However, this does not mean that no recovery can occur. The brain is somewhat flexible and is able to reorganize itself, to an extent, in order to regain lost function. This is known as brain 'plasticity'.
During recovery, other areas of the brain take over the activities of the damaged areas and new nerve pathways can be established using undamaged brain cells. Engaging in activity helps these alternative pathways to develop.
Rehabilitation aims to help the brain learn alternative ways of working in order to minimise the long-term impact of the brain injury. Rehabilitation also helps the survivor and the family to cope successfully with any remaining disabilities.
Timescales for recovery and rehabilitation
In the first month or two after a severe brain injury it is only possible to guess at the length of time that recovery will take and the likely outcome. All that is certain is that recovery is a slow process and will take months or years rather than weeks.
Six months after the injury the picture will be clearer, but it is wise to wait until about a year after the accident before making any important decisions regarding the future. After a year or so one can be reasonably certain about the eventual degree of physical recovery. However, psychological recovery can take considerably longer, and it is usually these more subtle psychological problems that cause longer-term difficulties, particularly for family members.
People do sometimes talk about there being a limited 'window' for recovery after brain injury, for example, that recovery ceases to take place beyond two years. However, this is now known not to be the case and people may actually continue to improve for a number of years after brain injury. Indeed, many people say that they never stop re-gaining the skills that they lost following the injury.
Nevertheless, the greatest visible progress does occur in the first six months or so post-injury and after this improvement is often less obvious.
Accessing brain injury rehabilitation services
There are many rehabilitation services across the UK, run by the NHS or private firms. Choosing which rehabilitation unit to refer someone with a brain injury to should involve the clinical team, the patient and their family. Once a referral has been made, the rehabilitation unit will usually carry out an assessment to make sure their service is suitable.
Availability and funding for places varies. However, most units, including private ones, accept NHS referrals and will be funded by the NHS. Other possible sources of funding include the local authority, medical insurance, compensation claims and self-funding.
It is important to ensure that whoever is likely to have to fund the rehabilitation is aware that a referral has been made. The rehabilitation service will not be able to accept an admission until funding has been authorised. Many services accept referrals from outside their own area, but there are often limited places available and long waiting lists. Specific details about the referral process, availability of places and funding options will be available from the unit.
Taking up a rehabilitation placement is an important commitment, and it is wise to explore all the options, visit different rehabilitation settings, and ask as many questions as possible before a placement is confirmed.
"Family members are very often a crucial asset to the patient, providing both long-term support and a major contribution to the rehabilitation process. It is also important for the team to recognise that family members often have a special rapport with the patient and may detect subtle communication in advance of the professionals.
"Families can provide valuable insights into the patient's character, choices and ambitions, as well as important information on the presentation of difficulties in the home setting. This is essential in initial assessment, and in the monitoring of rehabilitation gain, to minimise under-reporting of difficulties when the brain-injured person lacks insight"
(From: Rehabilitation following acquired brain injury: national clinical guidelines, BSRM, 2003).
If your relative has been discharged home without any access to rehabilitation, and you have reason to believe that they would benefit from it, there are still options available.
You are perfectly within your rights to actively seek rehabilitation services, even if you have been told that there are none available or needed. The first thing to do is discuss the matter with your relative's GP and/or consultant. They may be able to provide a referral. You can also contact rehabilitation services directly. It is advisable to contact several units and visit them to assess their suitability before deciding.
Society accepts the need to grieve and publicly mourn the physical death of a loved one, but there is little understanding of the need to grieve the “death of a personality” when the person is alive. The person may have physical and/or cognitive limitations; however, those individuals and their family living with such profound change are often left reeling in unfair comments like, “It could have been worse.”
There is no timeline to grieve and mourn. Unfortunately, society operates on the thought that people need only “three days bereavement leave” and/or that in a few months everything and everyone will be back to normal. It doesn’t work that way for both physical and non-physical deaths. Remember this: It isn’t time that heals all, but rather what we do with the time that heals us.
The layers of loss following a brain injury and the uniqueness in the realm of grieving are overwhelming for many. To adequately grieve these layers of loss, it requires those involved to explore and determine the primary and secondary losses of the brain injury and how this impacts them. This applies to both the survivor and to their loved ones. Once the layers are identified, then people can begin to work through their feelings.
Reflect on the life losses that have you have experienced, including brain injury. Do you feel that you were able to fully acknowledge the grief that resulted from your loss? Do you feel that others understood or supported you in grieving (feeling) and mourning (giving expression to those feelings) following loss?
Loss associated with brain injury could be physical and/or cognitive, but there may also be additional losses in relationships, lifestyle, employment, and in the person’s sense of self. Each loss requires reflection, expression, and acknowledgment before healing and acceptance of a new life can take place.
We’re all familiar with the concept of grief – a feeling of intense sorrow usually caused by someone’s death.
But after brain injury grief can occur in response to the loss of the previous self, as the cognitive, emotional, behavioural and physical effects of the condition change every aspect of a person, turning them into ‘a new me’. This form of grief is no less real and no easier to cope with, but brain injury survivors and their family members often find traditional approaches and support networks are unable to adequately address the problem.
“Grieving for loss of self and the person you were is a very difficult and a very personal journey. Looking back, the rehabilitation teams have told me countless times I need to grieve for who I was and accept she is gone, but no one offers guidance on how to do so.”
Grief tends to follow five stages: denial, anger, bargaining (the feeling of ‘if only...’), depression, and acceptance. Reaching the acceptance stage is difficult and by no means a certainty, but after brain injury things can be further complicated by the unfamiliar, complex and often unpredictable effects of the condition.
In the early stages after the injury, grief can be a particular shock for family members, especially when their loved one is discharged from hospital and the changes become apparent.
“People don’t understand at all,” said Laura Linton, whose father sustained a brain injury. “I am sick of people commenting ‘at least you have him’, or ‘be grateful’. We have been handed back a totally different person and we are all struggling with this.”
Family members can find it particularly difficult to cope with the absence of the person they once knew (the former self) while adapting to the presence of the new version.
Julie Heath explains the journey of grief following her husband’s brain injury: “I have grieved for the changes in my marriage, for the father that the children no longer have, and for the future I thought I had. I have coped through talking with friends, having counselling, and by just being prepared to acknowledge that it is grief I am experiencing.”
Traumatic brain injury (TBI) is a major cause of long-term disability in industrialized and developing countries across the world. An estimated 10 million people will be affected annually by TBI, and by the year 2020, it will surpass many diseases as the major cause of death and disability. This makes TBI a pressing public health and medical problem. An incidence rate of between 150–170 per 100,000 is demonstrated in Latin America and sub-Saharan Africa due to road traffic accidents compared to a global rate of 106 per 100,000. The World Health Organization has predicted that road accidents alone, which account for many instances of TBI, will constitute the third largest contributor to the global burden of disease and disability (after heart disease and depression).
A recent study of nearly 3000 serious head trauma cases found that 52% of survivors (154/100,000 population) were moderate to severely disabled at 1-year. Many patients never recover full social independence, even though they may have no physical disabilities and a normal life expectancy. At 4 years post injury, Jacobs found that most survivors lived with their families and neither worked nor attended school, imposing significant psychological burden on families who care for injured relatives. Close relationships are at risk and many marriages and partnerships break down, increasing the risk of social isolation and subsequent psychological distress to the survivor. Mood disorders are very common during this period and there is a high risk of suicide. There is little evidence of improvement in psychological problems between 2- and 7-years post injury, with survivors remaining largely dependent upon family support, thereby potentially imposing a lifetime burden on relatives.
In terms of long-term outcomes and recovery, it has been recognized that disturbances of cognition (often in the form of executive dysfunction), mood, and behaviour constitute the most debilitating aspects of brain injury. The term neurobehavioral disability has been employed to encompass the diverse range of disabilities that often result in wholesale changes in a person’s character or personality. These changes in personality are often reported by family members as constituting the greatest source of stress and burden, which has an impact on psychosocial outcome.
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