Updated: Jul 21, 2021
Even though COVID-19 has produced a mixture of challenges for everyone, it has had a more profound impact for many as it has made the future uncertain – and among the most vulnerable, and most affected by lockdown, are brain injury survivors.
Those with brain injury, their support teams and their families… it has been an unprecedented and unmitigated rollercoaster. Digby Brown and Case Management Services (CMS) continue to make progress with clients, their families and care staff during these troubling times with CMS making adjustments to the rehabilitation and care brain injury survivors require while sticking to the social distancing rules of lockdown.
I don’t believe I am at risk
People living with cognitive difficulties can have a hard time understanding why they may be at risk or why their lives now have restrictions.
Jacob is an older man in his 70’s who lacks capacity. Before lockdown he had support within his own home and had a daily routine.
But since lockdown, his life changed: this resulted in a decline in his mental and physical health. His support package – where he would be visited at home by a care worker every day – became limited to only essential duties and that left him feeling alone for long periods of time.
Sadly even with constant training, Jacob did not understand the reasoning for social distancing or even the need to wash his hands more than normal. He doesn’t understand that there is a virus affecting everyone and that means he doesn’t understand why his life and his routine has changed. This shows he clearly is a risk to himself and his support team and makes him very vulnerable.
With Jacob there is no straight forward solution. The best thing to do is to monitor the person closely and be ready to quickly gain additional support as things begin to go back slowly to normality.
Life in lockdown suits me
With strict restrictions and social distancing it has allowed people to go at a pace they can cope within the world.
Lucy went through a brain injury three years ago and stays with her partner. She had an active routine with weekly activities and had help from a support worker daily.
Before COVID-19 she struggled with socialising and keeping up with her friends as she got tired easily.
But with lockdown enforced, it created an environment that made her feel as if the world moved at her pace. She no longer felt the pressures of feeling like she has to be busy, productive or achieve certain goals.
This has highlighted to Lucy and her therapy team that it is okay to pause and take a moment to breathe. Lucy has agreed to take steps on how to start her rehabilitation with her case manager and to review her care needs at a slower pace.
I don’t want to admit that I need help
Matt is 45-years-old, has a mild brain injury and is dependent on his wheelchair - he also lives at home with his two teenage sons.
Matt would describe himself as a very independent and determined man who is focused on improving his physical health. He sees himself as someone with a brain injury that has no impact on his daily life or doesn’t need any extra support.
Despite this, lockdown created new obstacles - and for Matt to face uncomfortable truths. He couldn’t go outside and do his usual fitness activities and visits from his support were reduced to just helping with essential duties.
The mixture of increased cognitive and physical demands alongside social isolation due to his two sons being at home and restricted support highlighted difficulties that he tried to mask before.
Matt received support from his case manager and is now able to speak to a psychologist online to help improve his fatigue, mood and create different strategies to help his life feel a little bit easier. He now feels like he has stepped into a new stage of his recovery.
I feel lost
For Thomas, the loss of regular contact from his therapy team created disruption to his stable routine. This resulted in lack of sleep and his mood deteriorated. He started to become anxious about his recovery being on hold. This panicked him as areas of his life were now out of his control and he started to fixate on the accident that caused his brain injury.
With the help of his psychologist and case manager he was able to modify his goals and organised a weekly routine consisting of online brain training, physical exercise, learning new skills and social media. He now feels he is in control and on the right path again.
I might have lost my routine – but I found strength in myself
Several years ago Adam endured a brain injury. He struggled coping with the change within his role of his family.
Now no longer the bread winner, he began to view his relationship with his close ones and himself differently as he was now more reliant on others than he was used to before.
Lockdown however created an extraordinary chance for him to redefine himself and he was able to support friends and family who were struggling with adapting to the new normal.
While his wife was working long hours he took control of home schooling, running the household and entertaining two young children.
This was a challenge at the start however with the help from his case manager. They were able to create a new daily schedule of tasks and created rehabilitation activities which he can include the children in.
His confidence started to return and he was willing to try new skills such as cooking and using technology like Zoom. This enabled him to stay in touch with family and friends.
Lockdown provided Adam with an unanticipated and welcome chance to spend time with his family, discover his own resilience and boost his self-esteem.
Handling daily challenges of having a brain injury whilst in lockdown did present various challenges. This could have involved being made to adapt to change, stepping out of their comfort zone to learn something new, recognizing the greatness of pausing to rethink their priorities and accepting one key thing:
It’s okay to ask for help.