Families can also feel that life is different following their loved one sustaining a brain injury and grief can be a part of the prevailing sense of loss that many family members experience. Family grief is dealt with separately to avoid confusion. However, it is helpful for those who are living with a brain injury to understand that their families can also be affected.
Grief can affect us physically and psychologically and is a natural response to change and loss. Any lost opportunity to recognise, accept and manage change and loss can cause feelings to prevail, possibly affecting outlook and emotions over the longer-term.
Most people living with brain injury don’t always understand the source of their sorrow and distress- they just know they feel it. That these feelings can be explained above and beyond any cognitive or executive outcomes of brain injury can be a relief – it helps people to understand that how they feel is something they can come to figure out.
There are no set rules for who will struggle with grief following a brain injury, but in the main, those who fall in the spectrum between severe concussion and ‘mild’ traumatic brain injury seem to fare the worst, perhaps as a result of maintaining insight and self-awareness. People in this group tend to struggle more with a loss of self-identity also associated with grief, whereas the loss of insight and self-awareness are generally more often associated with severe diagnoses.
These generalities do not mean that those with moderate or severe diagnoses are not confused or overwhelmed by sadness, loss and grief, but they may have more difficulty or take longer to recognise it or may not have the memory or capacity to be conscious of the life changes that have occurred.
On the other hand, the families of people at the other end of the scale, in the moderate to severe part of the spectrum, often suffer a tremendous sense of loss themselves because of acute changes in the ability of their loved ones to communicate and be personally present.
Grief and ambiguous loss can affect everyone. People can yo-yo from grief to gratitude and back again. The post brain injury journey can be a tumultuous one for anyone.
In many respects, for those living with a brain injury, you do need to be able to retain some cognitive skills to be conscious of life changes and resultant losses – again bringing the impetus which drives grief and conscious feelings of loss back into the less severe ends of the brain injury spectrum.
Even when the injury has severe effects on comprehension and awareness, the loss can still be felt inwardly as an inexplicable pain. Some people are unable to verbalise or recognise the source of their feelings because of executive and cognitive change, but it can nonetheless have a distinct unconscious pull on how people think and how they behave emotionally. People can become stuck in the shock stage of grief without realising it, and it can take unbelievable amounts of time for people to break through and work out what it is that is weighing them down.
It can be a huge relief when you describe how you feel to someone, and they say, ‘that is grief.’
A different kind of grief
In many ways, a lot of people feel a loss or kind of death of their previous self following a brain injury. These kinds of feelings often become entangled with the loss of self-identity many people feel when they can no longer think or do the same things as they could before the brain injury.
For many people, a brain injury means they can no longer follow their dreams or life plans for the time being, but, it doesn’t feel transitional or temporary. When people think that opportunity and functional contribution to achieving pre-determined life goals is lost this can bring about the typical ‘symptoms’ and distress we usually associate with finality and death and the resulting feelings of grief.
Because there is no finality the type of grief people struggle with after uncontrollable and often traumatic external change is called an ambiguous loss. Associating feelings which are often vague and inconclusive with known facts can cause contradictions in the way people react and think. Often there is no concrete verification of some of the psychological adjustments that need making, and people can struggle to identify why they feel so much of their life now seems senseless or as though they are stuck in limbo with no way of knowing what they can aim for or where to invest their energy.
With an ambiguous loss, there is no closure and people have to work out a way to live with the uncertainty they now face. Many people do work their way through this process without consciously realising this is what they are doing, and so in many respects, recovery from change is a natural development which is often lost beneath the array of other things going on at the same time.
Many professionals believe that we can’t recognise ‘ambiguous’ loss unless we have experienced it ourselves, however, being given information can allow others to empathise because nearly everyone has experienced some kind of ‘physical’ loss. Most of us have experience of dealing with sudden and unexpected change and are aware of the types of thoughts and feelings people can have.
It doesn’t have to be the same experience for us to be able to empathise with how it feels to deal with deep disappointment and quashed expectations.
We know that many people find it difficult to adjust to change, and this could be one of the ‘unseen’ causes of ambiguous loss that aren’t always explored by psychologists.
All feelings of loss are serious
Wherever the feelings of loss come from, and no matter what causes them, we must all remain alert to the fact that sadness can lead to depression and inexplicable feelings of deep sorrow and anguish. People can become psychologically ‘stuck’ without realising the cause of their heavy load, and for this reason, unmanaged loss after a brain injury can continue to manifest as thinking and emotional problems into the long-term.
Unresolved loss or the missed opportunity to manage change can lead people to become bitter, angry and resentful, not only about their past but in their everyday thinking and lives.
These outcomes can start as contradictive thinking and emotions. For example, people may feel:
- sad about some things but happy about others
- alone even though they are connected to and surrounded by family and friends
- powerless and unable to bring control to their lives but at the same time driven to get through the situation
- resentful about their injury but thankful to still be here
- burdened by overwhelming changes but grateful for other aspects of their life
- doubtful about the present or their future but hopeful and desiring and aiming for change
- frozen while they are transforming and healing
Contradictory thoughts like these can cause people to feel that they are living on a rollercoaster and unsure what to believe or where to invest their energy and intentions when everything seems truthful/factual and worthy of their time.
Feelings of loss can concern health and well-being as well as self-confidence and esteem being affected. People can experience poorly associated thinking towards their present circumstances without being able to fathom where the pattern started.
While’ ambiguous’ in terms of psychology, all feelings of loss need to be acknowledged. This acknowledgement can be the key to reaching acceptance and eventual resolution and can help someone turn their thinking and life around at any stage post-injury.
Ambiguous loss is a relational disorder caused by a lack of facts. In everyday life, untenable situations can be maintained indefinitely after change because people can ‘pull’ reason and experience into the equation. Without these two necessary concepts dealing with change and futuristic change can be much harder.
When people lack understanding of the cause(s) of their sadness, their sense of grief can become ‘frozen’ and challenging to shift.
As with many fears, there is often a lack of ‘root’ or ‘tangible’ foundation, and as such, many concerns are concepts held within the mind as part of a transitionary stage between phases of life changes. Each person has a valid individual and different view of the world.
Some people are naturally more accepting of change and may even revel in the excitement of something different coming along. Other people feel a strong connection with stability or might be unconscious of their fragility caused by previous losses that hurt so deeply that they unconsciously try and hang onto anything that hasn’t ‘moved’ since.
In the early stages following a brain injury, people may be stuck in a state of shock and disbelief, and if they aren’t careful, this can lead to the initial stages of denial which can be overlooked. Avoidance can become more deeply seated when people are overwhelmed by trauma and change that is out of their control. Denial can become a contest of wills, and despite every effort by family and friends to help, the loss, hurt and disbelief can become part of the story of blame, innocence or victimhood.
Many people are simply not ready to accept the facts and others may ignore changes they are not prepared to face. Many people describe a sense of perpetual numbness that never seems to lift and usually goes hand-in-hand with profound and overwhelming confusion, an inability to ‘grasp’ any thought and to make it ‘real.’
Because so much is happening, people can become disorganised in thought and action and may feel restless, aimless and apathetic due to being fearful of more change or the effects of further incidences arising which they cannot control. Some individuals withdraw and decrease socialisation, becoming lonely and confused by unreality. It is not unusual to see that people develop unconscious coping strategies, especially when they have experienced multiple losses.
There are no formal processes for managing grief and ambiguous loss; there is no ‘right or wrong’ way of coping. However, following a brain injury, it is crucial to make people aware of the possibility of these coping strategies becoming a habit which will not only interfere with thinking but could make the recovery journey much harder.
Whilst deterioration is a natural, useful and necessary part of the grieving process people will need guidance and support through this stage although sometimes it is better for loved ones to accept the process and to be supportive while standing back and allowing nature to do her work. Efforts to try and help people to see a different perspective can be taken as a lack of understanding or acceptance. When people shut down, let them know you are there if they need you.
Physical symptoms which typically show up at this stage include loss of appetite, sleep disturbances or nightmares, and may show up as visible anxiety or panic outcomes.
Crying, anger, frustration and irritability are all outlets for grief. In many ways, these are signs of any inner conflict and protest that is happening. Some people isolate themselves while going through this but may still be unable to control emotional outbursts, panic, anxiety and guilt, shame or embarrassment. It can be tremendously difficult for people to isolate and understand these behaviours because they are also outcomes of brain injury and generally indicate frontal lobe damage.
It can be challenging to watch a loved one go through depression, feeling helpless, sadness, regret, fear and uncertainty and sometimes when people detach themselves as a way of coping, this can make it difficult for people to offer comfort or to know what to do.
Eventually, people have to face their inner troubles and will typically go through a process of reevaluating their beliefs and faith. Those struggling with a lack of self-awareness or loss of experiential memories may take years to get to this stage, but sooner or later, everyone will start to form and tell their story. They will begin to reach out and be willing to talk to people and seek help with finding meaning.
Grief and loss following a brain injury can be complicated. The important thing is to recognise this could be happening and to get professional help to deal with it.
Dealing with Grief
There is no magic wand because even when people do understand why they feel so sad about changes, this doesn’t make them ‘just go away.’
There can be deeper psychological issues that need addressing, and in many ways, grief following a brain injury can be indicative of other unresolved issues from the past. Brain injury can be the trigger that recycles previous unhealed grief.
Not everyone has access to specialist counselling, and many people are left to deal with their feelings and struggles on their own. In time things do change and so do perspectives, however, this understanding is rarely of any comfort to people who feel a profound loss of power and control over their life.
Grief can be associated with feeling a loss of purpose. For many people their self-esteem is strongly linked to what they do and when this is taken away, for example, when people are unable to return to work following a brain injury, many people become lost and feel a deep emptiness that they don’t know how to fill. This need can lead to people withdrawing and isolating themselves while they ride the emotional rollercoaster of dealing with an undetermined future.
One thing is always evident. The more help people have from specialists such as neuropsychologists and occupational therapists, the more likely they are to understand what they need to focus on in terms of executive, cognitive and emotional recovery.
Finding a new purpose can take a lot of soul-searching and very often people have no idea where to start. There can be stagnation or disconnection between what people believe and what they think about themselves and life. These inconsistencies are fed back to us through our emotions, and we begin to notice that we never seem to be able to find an inner equilibrium or balance.
Sometimes, when people realise that their sadness is an indication that their beliefs need updating, they can feel a huge relief. It can seem as though they have found the cause. When addressed, people begin to step into an acknowledgement of the changes, which then leads to acceptance and the updating of beliefs.
Acceptance and psychological adjustment to losses can feel enlightening and as though a weight of burden has been lifted. People usually start to socialise again although any problems with filtering noise and light, for example, or physical changes, can reduce how much and how quickly people pick their lives back up. Eventually, people work out that life continues and while it may never be the same, new opportunities to be and feel involved do come again. People realise that all of life is filled with uncertainty, change and chances to grow.
Everyone has value and purpose. We all have ways to contribute, and often, when people start to focus on this and look inwards, they may find that many aspects of their personality are now blossoming. For example, people may find that they are more compassionate or empathetic. A brain injury can help us develop our strengths.
Finding a new purpose doesn’t have to be attached to a salaried career, and when you start to change your mind about what is possible, this is when new avenues automatically open up to us. While we remain stuck with outdated beliefs and priorities, we remain closed to new ideas and opportunities for personal growth.
How we inwardly connect to our goals and dreams can tell us a lot about our expectations of life. We all create and manage this in different ways due to culture, individuality and other influences and attachments. There is no denying the fact that some people feel a profound sense of destitution when a brain injury brings extensive life changes and perceived destruction changing how they look at and think about themselves, who they are and what they will now be able to achieve compared to the master plan they held before.
Some people describe brain injury as a kind of death wherein the original self or life stops, and another starts. They want to go back, and they want their old life back, including everything it entailed from relationships to career, health and more. They might call it a ‘second life’ and will talk about the ‘new’ person they are now.
Other people understand the need to reach acceptance while some appreciate the life lessons they have been through and recognise deeper wisdom gained through their experiences. Every experience is valid, and much can be achieved through peer support and by sharing thoughts and experiences with others.
Anyone who feels a sense of loss or grief can benefit from working with a neuropsychologist or a counsellor who specialises in working with people following a brain injury.
There can be a lack of services and professionals who specialise in or educate about ambiguous loss which is often seen as complicated grief. Eventual closure is reached by working psychologically and spiritually through stages to achieve acceptance.