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Coping with grief after brain injury

Thu 29 Jun 2017

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.

“Even ten years on I struggle knowing my life isn’t the same,” said brain injury survivor CuriousConnie, a member on our HealthUnlocked forum. “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.”

A carer's perspective

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,” she said.

“I have coped through talking with friends, having counselling, and by just being prepared to acknowledge that it is grief I am experiencing.” 

A survivor's perspective

For a survivor of a brain injury, the effects of the condition can create a different but equally difficult experience of grief. 

In the early stages, particularly while in a rehabilitation setting, a person may receive more intensive support, with clear and measurable goals for regaining lost skills. It can be further down the line, and especially when they are discharged home, that the reality of living with a brain injury becomes apparent and the long process of building ‘a new me’ begins. 

“Once I realised that I was grieving and went through the steps, I was able to start moving forward,” said Chrystal Thorburn. “I needed to grieve on my own, in my own time. 

“Online support groups were a major help through the many stages of the grieving process, which was staggered as you think you’re getting better and then next minute you’re back down again. Grief was an unexpected thing to have to deal with.”

Navigating through the maze of feelings and emotions to reach an acceptance stage after brain injury can require a great deal of support, trial and error, and motivation. 

Gary Kearney explains his outlook on the issue: “An ABI is a massive change, almost instantly. Yes it is horrible, but acceptance of the reality is essential. 

“You cannot force it but it will happen. Listen to the inner you, listen to Headway and other groups like them. They help. The last thing is this, listen to other survivors with an open mind and heart. They know.”

A professional perspective

‘I would give almost anything for this never to have happened to me’. 

“As a clinician, this sentence in all its various guises, spoken by many of my patients over the years, captures some of the sorrow, loss and pain which colour the highly individual experience of grief after acquired brain injury. 

“Because of each individual’s personal experience of brain injury being different, grief does not always follow predictable or set stages of mourning after brain injury. 

“From a more academic perspective, factors such as time since injury, awareness, family support, pre-injury personality traits, social networks, and severity of the injury can all influence the person’s experience of grief.

“Furthermore, there is often a focus in the literature on the loss of ‘how things were’, but again, as a clinician, working psychotherapeutically I also often hear about the grief regarding the loss of ‘what might have been’, were it not for the injury. 

“As clinicians, we can never say we really, really know what it must feel like to suffer a brain injury. But what we can do is offer the best evidence-based rehabilitation and give very generously of our time, with compassion, truthfulness, and loyalty.”

- Dr Rudi Coetzer, Consultant Neuropsychologist

Help and support

It is vitally important that people experiencing feelings of grief seek support. Struggling through these feelings alone is sure to prolong the grieving process, and may cause ongoing feelings of loneliness and depression.

Speak to your GP or, if you have access to one, a brain injury specialist about your options. You can also contact our free, confidential helpline on 0808 800 2244 or helpline@headway.org.uk to discuss your feelings and concerns.

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