Carers Week 2020

Carers Week 2020: The unsettling impact of lockdown on those living with
an Acquired Brain Injury

12 June 2020

During Carers Week 2020, we help to make caring visible by sharing voices of staff members at Kingsley Napley, who are either carers themselves or witness the effects of others being required to fulfil a carer’s role. Today, we share Claire Parry’s story about her brother, who has an Acquired Brain Injury, and the unsettling impact of the COVID-19 lockdown on his stability, routine and well-being as well as the challenges experienced by his family and carers.

Claire Parry’s story
We have all struggled with the changes to our routine during lockdown, but those living with an Acquired Brain Injury (ABI) are likely to be struggling more than many.

My brother suffered a life-threatening accident eight years ago and his resulting ABI left him with serious physical and cognitive impairments. After an initial prognosis that he would never regain motor function or speech, he has made unbelievable progress in his rehab both physically and mentally. He is currently a member of the GB Paralympics Development Squad and can beat everyone in our family at Scrabble (tip: learn all the two letter words). However, he does still struggle to a significant extent with his memory, in particular his short-term memory. He is also affected by confabulations; he fills in gaps in his memory with fabricated information and struggles to separate his thoughts and dreams from real memories. Confabulations can lead to conversations ranging from the hilarious to the absurd, and it is very difficult to try and explain to someone who is convinced of something that it is their mind playing tricks on them. These issues mean he is very forgetful and can easily become confused. He is also unable to live alone and relies on help and assistance from family and carers.

Supporting my brother to be as independent as possible has been a huge focus for my family. Before COVID-19, my brother’s diary was packed with gym classes, athletics training and guitar lessons. He also walks dogs in the village and volunteers at a local wildlife centre. Although he did a lot of this on his own, using public transport where possible, he did so with a great deal of support, particularly from my mum. Any journey he makes on his own is one he has practised countless times, and for every journey he makes, he calls my mum multiple times to check he is on the correct bus or train, and that he is going to the right place. For a long time, we would offer him lifts to various places to try and save him time and make his life easier and he would resolutely refuse. Eventually, we realised why; the ability to travel places on his own gives him a sense of control and independence that he hasn’t experienced since before his accident.

Lockdown has been tough on everyone but for anyone with an ABI this is especially so. Those living with ABIs depend upon stability and routine and often find disruption to their routine incredibly challenging and unsettling. During this pandemic all of my brother’s activities have been suspended, he cannot travel alone anywhere and the routine that has been carefully constructed to help him with his memory has vanished. This has had a knock-on effect on our family as we have struggled to work out how to help him maintain his sense of independence and purpose in these difficult times.

However, my brother is lucky to have a network of support. He is involved with a charity called Silverlining, who have moved their meetings to Zoom. He lives at home, and as a result of the necessary work from home arrangements, he has been able to spend more time with his family who might otherwise be out at work. Many others have not been as fortunate. Since lockdown, many of those who rely on external carers have been left without any respite at all, taking a huge toll on their own physical and mental wellbeing.

There are an estimated 4 million people juggling caring responsibilities with work, as well as the estimated 1 million carers who are over 64 and claiming state pensions. Everyone is keen to know when we can get our hair cut or eat out at a restaurant, but some are far more eager to know when rehabilitation centres may open, or respite care will be available. As we ease out of lockdown and begin to find new ways of living and working, we may no longer clap for our carers but we can and should find a moment to think of them, celebrate all they do, and more importantly, who they do it for.

Further information

To find out more about Carers Week 2020 and how you can take part and help make caring visible, please see here.

If you would like to find out more about Silverlinings and the work they do to  improve the lives of those living with brain injuries, see here.

See also our previous Carers Week blogs:

About the author

Claire Parry is an Associate (Barrister) Kingsley Napley’s Regulatory team.

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