Reconnecting with the person before traumatic brain injury

By Elizabeth Gilmour

Traumatic Brain Injury (TBI) affects over a million people every year in the UK. That equates to many millions of family members and close friends of someone with a traumatic brain injury. The brain is precious; it holds our experiences, the meaning we receive from those experiences, our likes and dislikes, how we behave, how we feel, and essentially who we are. When the brain is damaged, all these characteristics can be changed. This means that the person before the brain injury can be a completely different person after the brain injury. The physical changes can be more obvious, such as learning to walk or speak again. The changes can be emotional; they may become more frustrated or aggressive. Perhaps there are cognitive struggles, such as difficulty taking on another person’s perspective or having more trouble following directions. Maybe one thing they liked doing before, they can’t stand now. The changes can vary enormously from person to person and injury to injury. But one sure thing is that there is a change. And with a change, there is loss.

You may think the person with the injury is dealing with the changes. I mean, it is their personality that has changed, so surely, they are the ones dealing with the consequences. If you think this, then you are not entirely wrong; of course, they are dealing with their changes. However, they are not necessarily the only ones that feel a loss. Family members and close friends notice that their loved one has changed, and they may note that the person before the injury is not the same as the one after the injury. They may feel that they have lost the person before the brain injury. However, they are asked to love and treat their loved ones exactly the same. They are told that they are so lucky that their loved one survived that they must be relieved to have them back. But what if your son is not the son you recognise? What if your spouse no longer thinks like the person when you fell in love with them? What if your friend now yells at you when they never raised their voice before? What do you do then? How do you grieve the person that you lost when everyone else thinks they’re still here?

Currently, for family members and close friends of those with brain injury, there is a distinct lack of space for them to talk about, process, and be honest about the losses that they face when a loved one has a brain injury. There is a lot of difficulty when a family member has a brain injury; they may be thrust into more of a caring role and be continually fighting fires as the advocate for their loved one. This can make dealing with their own grief and loss a secondary consideration. Especially when support systems cannot see that there is a loss and may not realise the grief process. However, this can lead family members to feel alone in their grief, feeling guilt and shame that they feel this way. This is why there must be more research and acknowledgement of this grief. The study, Reconnecting with the Person Before TBI, is about giving space to talk about this grief. The study uses a grief writing intervention to help family members and close friends explore and acknowledge the losses and hopefully find a place of re-connection with their loved ones. Family and friends mustn’t fall through the cracks and get the support that they need so that they can continue to support the person with the brain injury, but perhaps more importantly, feel less alone and seen in their experiences.