Living with restrictions: Perspectives from a neurorehabilitation service
I work in an acquired brain injury service that provides rehabilitation services to adults who are either back living in their local community or in our neuro-residential settings. Primarily with the aid of various forms of technology, we have continued to provide psychology services to our clients during this period of Covid-19 related restrictions. One of the most interesting reflections that is emerging from our recent clinical work is our clients’ perceptions of the current way in which we are living. While there are of course individual differences in this, there are two emerging themes: ‘I’ve been practicing living like this for years’, and ‘Now people will understand what brain injury has been like for me’.
In talking about this with clients, they have highlighted that many of the restrictions we have been adjusting to over the past two months, have been significant issues for them for years: loss of employment, social isolation, lack of access to the wider community (related to loss of driving licence) and lack of access to family/relationships. This can all lead to a sense of having reduced self-worth, a loss of identity, and long days ahead to fill. A common experience that clients generally report in therapy is a feeling of an ongoing sense of threat, and that the brain injury which was sudden and unexpected has changed their perception of their own safety and the safety of the world around them.
Many of these aspects resonate to some extent with what the general population has experienced recently; and the people we meet in our services have the learned experience of how to respond. When we run groups, we sometimes talk about what advice could be given to people starting into a neurorehabilitation programme and how to ‘live with’ the brain injury. Our clients have identified that a similar approach could be used to advise the general population on how to ‘live with’ Covid-19 so that when we look ahead to six months’ time, we have used their knowledge to cope with a changed world.
‘The brain needs a plan’
Goal setting is a primary aspect of brain injury rehabilitation, especially with the executive functioning difficulties which can arise. In groups we talk about the frontal lobe and dysexecutive syndrome but the phrase that always appears to stick is ‘the brain needs a plan’. When the future ahead looks uncertain, with the all the losses that can come with brain injury, working on a plan through a routine and goal setting can help reduce anxiety and give back a sense of control.
There tends to be a lot of work done through individual therapy sessions on processing the grief that this plan is not the pre-ABI plan; however, working on sub-goals and achieving the bigger goals can provide a sense of achievement and reinforce that things are not stuck/static. We also frequently use a task analysis approach to relearn previous skills and to adapt to new ones. At present, we are working on task analysis for doing the grocery shopping now that there are extra Covid-19 related steps and rules to follow.
Suggestion from clients: Commit to a new plan. Include extra steps as needed.
‘Letting people know you care can be done in different ways’
Ability to engage fully in social activities is often constrained for those who have experienced brain injury by both physical (e.g. fatigue) and practical (e.g. access to transport) issues. This can especially be named to us for the bigger events such as birthdays/weddings/funerals. When these occasions cannot be attended, our clients have looked to alternative methods to recognise the event such as making artwork, creating a gift or sending a card. The response of appreciation is often reported back to us as something very meaningful for our clients. These ideas have been discussed more recently particularly with the changes to rituals such as funerals. With the restrictions on attendance, we need to find new ways to convey our sympathies.
Suggestion from clients: Draw/write/create something for others. It is very powerful.
'Do something that means something to you’
Self-identity can be particularly impacted by a brain injury. For clients we meet, in the initial few years after a brain injury, the roles that often define them can be reduced or gone completely. We therefore spend time looking at value systems and ways in which to live these values through activities that are personally meaningful. We have observed clients return to previous interests/hobbies, or take up new ones. They start to build things slowly back into their routine so they can identify with being a ‘good enough’ parent/partner/adult child/adult sibling/friend. They connect what they do with how that matches their value system. This can involve a range of descriptions including ‘spiritual’, ‘environmental’, ‘contribution’, ‘achievement’. The main challenge comes back to acceptance that while the same activities may not now be available, there are alternative ways to live their values.
Suggestion from clients: Work out what is important to you. Be creative.
‘Always have hope, even if it looks like a small light at the end of a tunnel’
The experience of brain injury has often been described to us as ‘hidden’ and ‘lonely’. The perceptions of others can intensify this experience as there can be judgements made about someone who ‘looks ok’ but has not returned to work. Sometimes these perceptions are verbalised by family/friends/neighbours. The shock of the brain injury itself can often manifest long after the hospital admission and when the person has returned home. The cognitive changes and the brain injury fatigue can significantly impact on mood. Many of our clients have described the feeling of a ‘fog’ and depression is commonly referenced in terms of images of ‘being lost in a forest/in a deep well/in a box’. When we talk with clients about what helped them come out of this, they usually mention a sliver of light. Then they use the word ‘hope’. They describe this as the most important thing to hold onto when all seems uncertain and the future is unclear. They say they look back over the past 6 months/1 year/2 years and think ‘I am glad I held on’.
Suggestion from clients: Have hope for the future. Things can get better.
In compiling these reflections, I credit all our clients who impart their experiences to us and ask us to share what they have learned with those that may need help. It also makes me consider what my hope is in six months’ time; that we may look back and reflect on the experience of isolation that is not unknown to those living with brain injury and that we continue to strive to find ways to ensure that there is more inclusiveness in ‘normal life’.
- Dr Lorraine Crawley, Senior Clinical Psychologist, Acquired Brain Injury Ireland
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