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The family experience of brain injury

After a person acquires a brain injury, the impact on the whole family can often be life changing as they adjust to a new reality and relationships come under intense pressure…

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Karen Ledger (KL): When brain injury occurs, it’s like a bomb going off in the family. Life will never be the same again for any of the members of that family.

People will be shocked, bewildered and overwhelmed, and they then have to go through a complicated process of adjustment, and people reach that adjustment at different stages.

The person with the brain injury will generally have a neuropsychologist assigned to support them. Most will pay attention to people’s feelings and emotions, but the rest of the family may not have any psychological support.

This situation doesn’t get better of itself without professional input, it can get worse and people’s mental health can and often does spiral down.

Louise Jenkins (LJ): It’s a particular challenge if you’ve got someone with little or no insight. They often won’t recognise the need for or be willing to engage with neuropsychological treatment until much further down the line, by which stage, the family may have entered a more advanced stage of crisis and their whole family unit may be at risk of breakdown. There are complex emotions involved in the adjustment process following trauma which include shock, guilt and loss.

KL: That’s a scenario we see a lot. The client’s relationships may get to an advanced stage of deterioration and as Louise says, crisis, before they’re able to accept help. This is often because there is an immense amount to absorb from their new world of injury, rehabilitation and the medico-legal process and clients do not have the psychological space to consider how they are, never mind undertake the rehabilitation.

LJ: That’s where some of the challenges come in from the legal perspective. The compensation claim process is quite rigid in that generally speaking, only the injured person can claim for financial losses and for professional support, but we maintain that as the underpinning principle for compensation claims is to restore someone to their former lifestyle, you have to consider them both as an individual and as part of the family unit. We try to build into the claim some therapy sessions not only for the injured person but also for their spouse and their children.

Some defendants (compensators) say they’re happy to support that because, if the family unit breaks down and the uninjured spouse has been providing a lot of the day-to-day support, prompting and encouragement that the injured person needs, the cost of commercial care to replace that support is significantly more expensive than the amounts you can recover in a claim for support provided by a family member. It is also about embracing the spirit of the Rehabilitation Code and Serious Injury Guide in looking at the wider family need.

KL: Often, people can’t work anymore; they feel their work is taken away from them. People get their sense of identity out of work, as well as from being a spouse or a partner, a father or a mother. And if they lose their ability to earn and their relationships start to deteriorate these are often perceived as more failure and thereby serve to reduce a client’s confidence and self-worth.

LJ: It is akin to a bereavement process for the uninjured partner, yet the person is still there with you.

KL: People don’t have to have a death to experience loss, and loss can activate a bereavement process. So they’re grieving for the person they once knew, and now they’ve got this new person which makes adjustment to the injury complicated. And the thing about brain injuries is they’re hidden. The person looks the same but behaves differently to how they did before. It understandably takes a long time for clients and family members to really grasp the effects of brain injury, because they’re often traumatised, angry, discombobulated and distressed.

The family that includes somebody with a brain injury goes through a process of understanding, just as the client hopefully does.  It’s a complex situation trying to comprehend what a brain injury means whilst feeling bereaved.

Family and children’s therapy is relevant too. Children often get missed because they deal with loss and trauma in different ways to adults. Children tend to get on with their lives, as if it’s not happening, so they need particular attention. They won’t be talking about it so much, but they’ll be experiencing it. The sooner that’s managed by specialists, the better it will be for children in the longer term, giving children the best chance of allowing normal development to take place.

LJ: It’s difficult because there’s a significant investment of time and energy put into implementing a rehabilitation programme and support around the injured person. This is integral to the claims process. The spouse can feel as if all the focus is on the injured person and they’ve been left out.

From a legal perspective, we try to involve the uninjured spouse as much as possible in discussing what we’re doing and why we’re doing it. We try to weave in that therapy support for the uninjured spouse so they come along the journey with us rather than becoming a disrupter to the rehabilitation programme because they feel excluded and unsupported. If securing interim payments through the claim to fund support is challenging at an early stage, our in-house team of client liaison managers, all of whom have a healthcare background, can provide time and input in discussing the challenges and in signposting for support both for the uninjured spouse and children as well as for the injured client. There are some really valuable resources for children, for example, which explain some of the problems that can arise in a parent who has sustained a brain injury to help them to understand and come to terms with changes in the family dynamics.

KL: People affected by brain injury can feel deserted by their partner and like a single parent.  This is because they’ve lost their partner’s contribution to childcare and work in the home. The complexity and challenges of living in these circumstances should never be underestimated.

LJ: At the point of injury, they are in shock and just want to be there for the person who’s injured.  I’ve worked with a number of people where the grief and adjustment process is very substantially delayed. These delays extend to weeks, months or even years.

They’re in a fight/flight/freeze situation. They’re managing a situation that’s about life and death initially in the most serious cases. When the acute stage is over and they have some space to start thinking about themselves, rather than the person who’s injured, they can start reflecting. It’s an emerging awareness that it’s never going to be the same again, that some degree of permanence will remain with the injuries, that this is how it will be in the longer term and a realisation that you need support to adjust to the new normal.

KL: It takes a while for that realisation to come in. I am often working with partners who are in that process of adjustment and what initially attracted them to the person pre-injury has been lost post injury, for example agile thinking and intelligence.  Moreover they now find themselves in a caring role and one where many strangers are entering their home and talking to them in alien language!  It’s not surprising that for many people this is often too challenging for them to manage and why therapy is needed as soon as possible for clients to regain their own personal power as soon as possible. They will have a private listening, respectful and tender place for them when the rest of their lives are so exposed.

LJ: They don’t know where that injured person is going to land with their recovery in the longer term. There’s a natural recovery process of a minimum of two years following brain injury, often longer, and they don’t know how much recovery the person’s going to make. They’re living with that uncertainty for a long time before being able to understand and adjust to what the long term will look like, often with significant physical, cognitive and behavioural changes which place great strain on sustaining relationships. Independent family law and financial advice is often essential to protect both parties in the event that the relationship does break down.

KL: I believe that acquired head injury is usually devastating to the person and those around them.  However, in my experience, people are often amazing in how they find the strength to establish new ways of being and making their life work for them.  Therapy can often speed up that process because clients feel heard, respected and understood, a powerful combination for a restorative process particularly when they are so often feeling powerless.  This process can help families stay together or decide to go their separate ways and with support they are more likely to do this without acrimony and additional trauma.  Observing and supporting clients and their loved ones to dig deep to find the strength and commitment to establish a new life is such an amazing privilege and honour for me.

LJ : When the claims process is managed by expert serious injury lawyers, early access to specialist rehabilitation and support will enable an injured claimant to restore their life to the best possible position and allow them to maximise their potential for the long term, restoring a sense of control and positivity for the future. Working together with therapists like Karen is essential to ensure that a multi-disciplinary network of support can be put in place in order to support an injured person to achieve their goals and rebuild their life as an individual and as part of a family unit after a life changing injury.

Louise Jenkins is a partner at Irwin Mitchell and leads the serious injury team at the firm’s Sheffield office. Karen Ledger is managing director of KSL Consulting and a therapist, counsellor and supervisor with over 30 years of experience.

 

 

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