“Thankfully, I’d come home early from work that day,” says Caroline. “Brian said he had a crick in his neck, which quickly became an intense headache. His ears were ringing, he was vomiting and he was screaming in agony. Brian was a charge nurse in A&E for years, so he knew the classic symptoms of a brain bleed*.”

He said, ‘I’m having a bleed,’ then passed out.

“I told the paramedics he thought it was a bleed,” says Caroline. “That meant Brian got the right medical care from the start. He’s had a good outcome, but his recovery was incredibly stressful.”

Facing hospital and becoming an advocate

“I knew what questions to ask, but advocating for Brian was exhausting,” she says. “Treatment plans changed, information was unclear, and every day I felt like I was asking for clarity. Brian was placed on a bright, noisy ward with lots of noise, which was really difficult for someone dealing with the sensory issues caused by brain injury. He was so distressed he would try to get out of bed.”

“It has changed my own practice at work,” Caroline adds. “I now have a much better understanding of how relatives feel, especially when they don’t have a medical background.”

Finding support from BICS

Caroline found out about BICS by chance and phoned straight away. Within half an hour, Service Lead Helen Stewart was at her home.

“It was like someone was finally interested,” says Caroline. “Until then, I felt like I was hitting my head off a brick wall. It was good to finally get some advice.”

As Brian became more depressed in hospital, Caroline struggled each time she had to leave him. Eventually, she decided to take him home.

Coming home and adjusting to daily life

Before Brian’s brain injury, life was spontaneous. “We were just enjoying life,” says Caroline. “We’d go to Canada twice a year. We’d go for big drives. One day I said, ‘I’ve never been over the Skye Bridge,’ and he said, ‘Let’s go.’ So we did. That’s what life was like.”

“You leave hospital and it feels like, ‘That’s it, away you go. We’ve sorted you. But how do you live and adjust the rest of your life to that?”

“Now, Brian feels like everything has been taken bit by bit,” Caroline says. “It feels like all your dreams, all your plans are just gone. At the moment life is very different.”

“We offer practical and emotional support to people like Brian and Caroline, helping them rebuild confidence and manage everyday life.”

“When we meet someone with a brain injury and their family, we take time to build the relationship, understand what they’re facing and work together on practical steps. This might mean help with benefits, finances, housing, independent living skills or family needs.”

“Brain injury can happen to anyone, at any time, and its impact can be devastating.”

Caroline says fatigue has been one of the hardest effects to manage, with Brian sometimes sleeping for 14 hours. Even everyday tasks can take a huge toll. “Even having a shower, he needs to lie down and sleep afterwards,” she says.

Brian’s short-term memory has also been affected, so the couple use a whiteboard in the kitchen to help him keep track of what is coming up. “At first it had too much on it and made him stressed,” says Caroline. “Now we only plan one week at a time.”

Safety is a constant worry too. Brain injury can affect judgement and impulse control, and Caroline says Brian cannot be left alone for long at the moment.

Support for Caroline as a carer

“I’m a carer now, and that has had a big impact on both of us,” she says. “Brian keeps saying he’s a burden, but he’s far from it. I try to juggle my shifts around all the appointments Brian has on. I’ve dropped a shift a week, which is a big drop in our income, but Brian needs someone with him all the time at the moment and I need peace of mind.”

“I’d do anything for Brian, but it can be full on.”

BICS, which receives funding from Renfrewshire Council, also works with Renfrewshire Carers Centre to support a Brain Injury Carers Support Group. This sits alongside other groups and catch-ups run by the BICS team, giving people affected by brain injury and their carers the chance to meet others in similar situations.

While Caroline now juggles work around Brian’s appointments and support groups, she also knows she can’t be with him all the time. The BICS team is helping to find Brian a befriender, giving him extra support and Caroline some time back. The support has helped Caroline feel less alone.

“They’re just there,” Caroline says. “I know I can just text someone if I need them. I’ve had moments where I’ve felt like I wanted to lock myself away, and being able to reach out has made such a difference.”

“If it wasn’t for the BICS service, I don’t know where I would have been.”

Focusing on rehabilitation and progress

Looking ahead, Caroline and Brian are focused on progress. There are still medical issues to consider, including MRIs and possible further procedures, but rehabilitation is Caroline’s biggest concern.

“Brian is dealing with the emotional impact of what’s happened. We now have great physio and occupational health support, but I am currently advocating for specific neuro and psychological support.”

Still, there have been hopeful moments. Caroline and Brian recently went on holiday to a quiet lodge in York and had a lovely week. For Caroline, the future is about taking things one step at a time, with support from BICS for as long as needed.

“We need to make the best of what we’ve got, because at the end of the day he’s here,” she says. “I’ll be forever grateful that he lived.”

Hear from Brian

“Quarriers are top drawer. They’ve been totally amazing,” says Brian. “Brain injury is definitely a hidden disability. After it happened, I would look in the mirror and I couldn’t accept I was so different. I would think, ‘I look fine.’ It takes a while to get that acceptance, but I think once it comes it’s a starting point.”

Brian says it has helped to speak to other people who understand brain injury from lived experience. “No one knows what it’s like unless you’ve gone through it, but they do,” he says. “I can see they’ve made progress, so I believe in my own progress.”

In the future, Brian would like to volunteer and talk to other people when he is ready. “I was totally lost, feeling, ‘What the hell’s going on?’ I could explain to someone, ‘I know exactly how it feels.’ If they see me having made some kind of progress, then that might help them.”

Acquired brain injury can affect anyone at any time

Every 90 seconds, someone is admitted to a UK hospital with an acquired brain injury.

*A brain bleed, also called a brain haemorrhage, means a blood vessel ruptures in or around the brain. This bleeding causes blood to pool in the skull, increasing pressure and depriving vital brain tissue of oxygen, which can cause permanent damage or be fatal.

To find out more about Quarriers Brain Injury Community Support Service, go to: Brain Injury Community Support – Quarriers