Carers are an essential and often unrecognised lifeline of support for people living with brain injury.
For Carers Week, we spoke to Anna, wife and carer of our member Dave, who joined Headway East London in 2015. Dave had encephalitis and now lives with a range of “hidden” cognitive effects which impact things like his memory, planning and concentration.
Can you tell us about your experience of being a carer?
I’m a full-time carer to Dave, my husband. He became ill within two years of us getting married, unfortunately. He had viral encephalitis and straight away everything changed. That was the start and end of our married life as we knew it.
The first two years were really difficult, it was hard to find the right support, and to the current day the care that he needs is still just as much. He needs micromanaging and constant reminding, from taking his medication to finding his things in the house.
We have a son, Mylo, who’s 11. He’s very caring. He worries a lot about his dad. It’s like having two children.
I often find myself having to justify everything about Dave because if people don’t know him and they meet him, they have no idea how much care he needs underneath it all.
Sometimes I feel angry. I gave up my life to care. I just didn’t know what else to do or how to be anything else. I’m glad that we’re in a supported situation now with Headway and with great neurologists.
How do you think Headway East London is helping you and your family?
Headway is helping massively. It’s a lifeline for us. There is nowhere else for Dave to go. There are no friends or other things that we can afford to do. I don’t know where we would be without Headway. The duty of care for me as a carer is massive, so it is really helpful to know that he is spending the day at Headway. I know that when Dave’s there, he’s very well looked after, happy and protected.
What advice would you give to those who are at the beginning of this journey?
There is support out there, but it’s not an easy journey. You have to go knocking on doors, explaining your situation. We found out about Headway by reading a leaflet and I would recommend getting in touch with them. If it’s an acquired brain injury, Headway UK is a national organisation and they can put you in touch with the closest branch.
There is ongoing work in Parliament to launch an Acquired Brain Injury Strategy, which will provide better support to people living with brain injury. What do you think should change for carers of people with brain injury?
I think there is a strong need for a wider understanding of how the experience of brain injury affects family and carers.
I used to read to my son a book called “My dad makes the best boats”, which explains to children that their dad loves them even when he looks angry or distant. Having a dad with brain injury has an impact on a child, but this is not something that is often talked about.
There’s not enough recognition. Sometimes I feel a lot of stress, I feel like a CEO of a massive company, because a lot of responsibility rests on one person. It’s hard to juggle being a carer and a mum and keeping us all safe.
Within a brain injury forum, there’s a lot of understanding, but not enough in the outside world.
Dave is an active member at Headway East London, he spends time between the kitchen and the Submit to Love art studio, and he is part of the team that delivers our Headway Eats supper clubs, devising a menu and cooking for over 50 guests. He recently spoke about his experience of memory loss at the Francis Crick Institute, as part of a panel with neuroscientist Julia Harris and neuropsychologist Vaughan Bell.
How did it feel to be in the audience?
It was very interesting to join the Francis Creek event. It was quite emotive for me to watch Dave in the panel, all I kept thinking about was the day he had the seizure and lost consciousness in my arms. When the audience was asked “If you could erase one memory, what would it be?”, I thought: that’s one.
The event was fantastic, and Dave was brilliant. These kinds of conversation and awareness are important. Quite a few people came to speak to us afterwards, asking “how do you do it”? Well, I don’t know. I’m not being virtuous. It’s just what I know I have to do. Lots of people deserted Dave after the brain injury, so it’s just us, our family.