I recently contributed to the following article, which first appeared on the Brain Injury Group website. It also includes contributions from Dr Dave Todd of Reconnect Psychology. I’m very grateful to Brain Injury Group for the opportunity to contribute to this article, which highlights an important aspect of life after a brain injury.
Sustaining an acquired brain injury (“ABI”) can not only turn the survivor’s world upside down but also that of their loved ones. ABI is not a singular experience; it can reach out and affect all those closely connected to the individual living with an ABI.
In this article I will explore the main themes and areas but it has to be said that the below is a non-exhaustive list. Each experience is unique to the individual and their families, and each group will have their different ways of managing and coping. Hopefully in reading this article (if you are affected by any issues raised below) then there is help available out there and a range of medical, therapeutic and legal professionals (including charities/not-for-profit organisations) that can help.
The initial 'aftershock'
Whenever I speak to people affected by ABI, I often have initial contact with their spouse/partner or close family member. The injured individual can usually not be in a capacity to discuss their injuries either because they are in hospital and are struggling to communicate, or are too traumatised themselves to go over what has happened.
That “loved one” connected to the ABI survivor will immediately become the main pillar which will hold everything up for them, be it figuratively or literally; the latter when it comes to helping them physically mobilise and the former when it comes to helping them practically in liaising with agencies such as DWP to ensure they receive vital benefits.
Becoming this “pillar” is an immense responsibility and shifts the parameters of the relationship between the ABI survivor and the loved one. For example, the injured father who cared for his teenage daughter pre-accident, now has the roles reversed. That can have a huge impact on the ABI’s survivor’s loved one because they will be experiencing a wave of emotions either simultaneously or one after the other. These can include feelings and emotions such as:-
- Shock – the loved one will still be experiencing shock at seeing the ABI survivor’s injuries. The ABI survivor may have undergone dramatic physical and cognitive changes making them unrecognisable to what they were. In some cases that loved one may have witnessed the accident itself or came upon the immediate aftermath; in those situations they may have sustained their own psychological trauma (in those instances it is strongly advised that the individual seek medical advice and even legal advice, if sufficiently close to the index accident – guidance on such topics (secondary victim claims) can be found elsewhere on the Brain Injury Group website).
- Relief – the loved one will be experiencing some form of relief that the ABI survivor has come through such a traumatic event. That can sometimes help as a coping mechanism but will likely not form as a long term solution once the realisation of the situation hits home.
- Adjustment – the loved one will be overwhelmed with the adjustment in their personal and domestic circumstances. Before the accident, if it concerned a couple, they may have shared responsibilities in the household. The ABI survivor may be physically incapable of doing certain activities, or so cognitively impaired/challenged that they cannot organise themselves to complete tasks. The loved one then shoulders much more responsibility on top of caring for the ABI survivor, all whilst trying to maintain a positive and upbeat outlook for the ABI survivor – that takes a tremendous amount of effort and fortitude and is incredibly commendable having seen countless people do this over the years.
The toll that effort can take though should not be underestimated and that loved one will forever be a vital pillar to the ABI survivor. What can be done then to strengthen that pillar or even add support beams to allow that loved one and the ABI survivor to treasure one another’s company and love?
Rehabilitation and relationships
In some circumstances, the ABI survivor may be fortunate in that they have the opportunity to bring a personal injury claim which opens the door to private rehabilitation to maximise their recovery. It may even be in some cases, where there is no claim, they have access to such therapeutic input through insurance or private healthcare. Where the situation is considerably more severe, often the state is in a position to provide the necessary care and therapy but these tend to be in a rehab centre/home as opposed to the community.
The ABI survivor, in having access to these limbs of support, is offered a route to gaining a better quality of life despite their circumstances. This can offer some hope to the loved one but it can also mean them then questioning their role. In the acute phase after the trauma it was them picking up the pieces and then all of a sudden, a raft of qualified professionals are drafted in to carry it on – what becomes of the loved one then? In short, they are as important (if not more important), than the therapy and support team. A good team of therapists and support workers will recognise this and ensure that the loved one is involved and kept appraised as to programmes and goals, in accordance with the ABI survivor’s wishes of course. The loved one’s wishes can differ from family unit to family unit – some may prefer to take more of a hands-off role, whilst some may wish to help out with some things. The key thing here is good communication and planning between the rehab team, the ABI survivor and their loved one(s). The loved one may prefer to help out with more physical therapy so training and discussions about what they can do should be held with the physiotherapist. Likewise, if they preferred to help the ABI survivor with more practical or vocational tasks then they should liaise with the OT. For those who wish to take a hands-off approach and resort to how their relationship operated pre-accident (which isn’t always possible) then good planning will be required as to how any additional support and care may be required with particular tasks the ABI survivor struggles with.
In some circumstances, it may even be appropriate to advise and recommend that the loved one(s) of the ABI survivor undertake a brain injury education workshop. These are not formal programmes but more an opportunity for the families of those concerned to get 1-1 time with the appropriate professional (usually a neuropsychologist) to help explain what is going on “inside the brain/mind” of the ABI survivor, so that they can ultimately better understand and relate to what they are experiencing. More on that below….
Brain Injury Education Workshops for Families
Brain injury education for families can be facilitated at any stage of the rehabilitation journey for their loved one, including whilst the survivor of brain injury is still undergoing structured rehabilitation in a residential or community setting, or post-rehabilitation input. Brain injury education groups often focus on specific areas of functioning or neuropsychological change following acquired brain injury, for example, in areas such as memory, executive functioning, mood disorder, or emotional and behavioural regulation.
There has also recently been development in supporting the process of adjustment to the injury as it is just as important for the family members as it is for the individual. For example, Dr Pamela Klonoff (2014) has completed research with family members after acquired brain injury in order to map out these different stages of adjustment, which, in the experience of the co-author (Dr Todd), can be useful in supporting and structuring brain injury education workshops for families. These practical and emotional processes for family members after brain injury are summarised below:
Working with family members in education workshops aim to support recognising each stage and develop the following: practical and emotional coping approaches, increasing awareness of factors reflecting warnings for family members own resources and coping, and indications if and when to access further support and help.
Another vital branch of support to help solidify relationships during the recovery journey can come from charities.
Headway is the national charity for providing help and support to acquired brain injury survivors and they have a network of local groups and branches (local groups are often themselves a charity and can offer a range of hands on services to those affected, including carers/family members).
However, if the ABI survivor sustained their injuries whilst on tour or are a veteran of the armed forces, then there are a host of charities and organisations out there can provide the scaffolding to the individual and their families/loved ones.
For assistance with whom to turn to for such charities then on the Brain Injury Group website there are links to relevant bodies on the following link: www.braininjurygroup.co.uk/brain-injury-group-directory/charities-support-groups/ . Alternatively Brain Injury Group can be contacted on 0800 612 9660 or 0330 311 2541 on their free helpline.
Relationship counselling and breakdowns
Sadly in some situations the toll of caring for the ABI survivor is too much and it can lead to breakdown in relationships. This is not uncommon and is an understandable consequence of what is a tremendously difficult time post-accident. The breakdown can occur from either the physical toll, or even the change in personality to the ABI survivor – the person that they were once were is no longer there, so the loved one understandably drifts away emotionally.
Relationship breakdown after an ABI, as mentioned above, is not uncommon and should not also be stigmatised. Such situations can be dealt with delicately, with respect and no judgment cast as to the how or why the relationship breaks down.
If the ABI survivor is married or in a civil partnership and that subsequently breaks downs, then they should seek legal advice from a recognised specialist in family law. Likewise, the loved one should advisably do the same. For the ABI survivor where they are involved in a personal injury claim, obtaining specialist family law advice is particularly pertinent as their compensation isn’t necessarily ring-fenced from any subsequent divorce proceedings. It is important for both the ABI survivor and their spouse to seek out advice from lawyers who hold out status as “collaborative” specialists in divorce proceedings. Such situations require a ‘human’ and reasonable approach and by instructing such specialists which may involve large awards, it may lead to a more amicable outcome. Some of our BIG solicitor members will have such family law specialists.
In some circumstances, it is possible to retrieve the situation between the ABI survivor and the loved one. There will be and are professionals out there which can offer the appropriate relationship counselling to help build bridges again between them. Again, more advice and support can be found on the relevant pages on the Brain Injury Group website or by contacting the helpline noted earlier above.
I hope that the above article has been of some assistance and even comfort; rest assured Brain Injury Group are on hand to guide you and your loved ones through this journey.
This article has been produced with the assistance of Ewan Bain, Switalskis and Dr Dave Todd, Neuropsychologist at Reconnect Psychology.