Jo Samples, 50, from Clifton is a carer for both her daughter and husband and has been supported by Headway Nottingham since discovering their rehabilitation centre five years ago. 

Jo explains “The Headway centre is a lifeline for us.  They teach us and everyone they support that there is a life after this.  Brain injury bares down on all three of us most of the time like a dark cloud of depression and anxiety… but when we arrive at Headway, we hear people talking and it’s like the sun is shining through”.

Jo has cared for Kim, her adopted daughter since fostering her as a baby.  Kim was removed from her mother’s care having been shaken badly by her arm and leg, resulting in two detached retinas and a significant brain injury.  Jo was told that Kim had ‘died twice’ wouldn’t sit up and was unlikely to ever be able to walk or talk. Despite the prognosis, with Jo’s perseverance and supportive care at Nottingham’s Queens Medical Centre, Kim walked at four years old, and her speech is good.  “Never say never” Jo says.

Kim, now 22 years old and has been assessed to have the capacity of an 8 or 9-year-old girl. Jo explains “Kim is very vulnerable and has put herself in situations that no one should.  Anywhere she attends away from our home needs a good understanding of her vulnerability and the issues she faces.  She unfortunately fell victim to a predatory boyfriend at 18 years old.”

Jo continues “For the first time in her life Kim has a place where she needs to be – at Headway Nottingham.  At Headway, even though their disabilities are very different, everyone understands the difficulties she faces. That’s massive for Kim. When she’s there the staff and volunteers understand the ins and outs of her brain injury and we don’t have to explain how and why she is vulnerable.

“In other places we’ve tried Kim hasn’t fitted in – her needs are too high, and her disabilities aren’t physically obvious.  I often think if she was in a wheelchair she might not have to struggle in the same way and people would have a better understanding. 

“If she’s uncomfortable she won’t look at people but when she’s happy she’ll talk. She struggles to process information and can’t do a lot of simple things like counting or recognising coins.  She can quickly become agitated and upset and when that happens she’ll cuddle her dolls for comfort and reassurance.  Her sight loss means she needs routine and to know exactly where everything is.  Irrespective of her challenges she’s entitled to a life like everyone else!  It breaks my heart that she might lose the place that she loves so much.”

Unthinkably, when Kim was just 12 years old, her father had a serious accident at work resulting in a significant brain injury.   

“Darren was knocked unconscious and was concussed.  Unfortunately, as Darren was the first aider, he received little care immediately after the accident.  He tried to go back to work after a week off but needed more and more time away as he couldn’t cope.  When he described his symptoms to a doctor, he was told he was being a hypochondriac despite not visiting the doctor for 10 years prior to his accident.

“One morning he woke up and didn’t know who me and our son were and over the following weeks was diagnosed with fibromyalgia, chronic fatigue… chronic everything. His memory was terrible, he couldn’t retain any information and he began to suffer with PTSD symptoms.  He didn’t fit the criteria for PTSD rehab despite us needing to install a bed bar and him giving me a black eye during one bad episode.  The physiotherapy that he did receive for his legs was later found to be creating pressure causing bleeding from his eyes so that came to an end.”

“A huge issue for both of us has been coping with adapting the house. I hate the stair lift in our house because it’s a constant reminder of what we have been through, but we need it, it’s the only way to get him into bed and I’ve dislocated my shoulder trying to avoid having one, so it has to stay.”

“It’s been incredibly hard watching Darren trying to shift his mentality. He’s been desperate to return to work and felt ashamed as he’s always shown the kids that you must work hard for what you have.  We’ve struggled because the bills don’t get any smaller and adaptations have cost a fortune, but we’ve got through.  Darren went from loving being a working man to barely achieving anything for himself and that’s had a devastating effect on his confidence.  I try to remind him that even if it takes him a month to complete a jigsaw it’s a big step forward because ten years ago, he couldn’t put two pieces together.  We always celebrate successes and I’m incredibly proud of him.

“One of the first things Darren did at Headway was take part in a Pottery workshop – something he would never have had the opportunity to try away from the centre.  He made a pot and he felt so proud of it.  Now the pot sits proudly on our mantlepiece.  It’s the best gift I’ve ever been given and it’s my most treasured possession.  When he gave it to me he said ‘now at least we have a pot to pee in’ and I knew his sense of humour was coming back!  It proved to him that he could do something for himself and it felt like a sign that everything was going to be okay. 

“I realised then that we had forgotten how to laugh, but Headway showed us that there are other people out there struggling with the same things as us.  The environment and members are wonderful – everyone ‘belongs’ and there’s so much laughter!  Someone will tell a joke and because of memory loss no one can remember the punchline, but it’s funny!  You learn so much more when you’re laughing than when you’re crying.”

“Kim and Darren both have very different needs, but Headway Nottingham manages to support them both and get the best from them. In other places I haven’t wanted to leave them, especially Kim as she’s so vulnerable, but at Headway her world has opened up. She was afraid to talk before but now we’re connecting.  We talk about the centre and the people in it, what they’ve done and what’s made them laugh that day.  We have conversations in a way we haven’t before. 

“I feel happy knowing that they’re at Headway – not only because they’re safe but because they’re actually learning and moving forward.  I can put my trust in the team and know that I’m handing over to people who’ll make a difference.  At first, I thought it was too good to be true! Of all the places they’ve been, I never want them to lose Headway.

“On the days I take them to Headway, that’s the most people we’ll see all week.  It’s difficult to plan ahead because we often don’t know how Darren or Kim will feel, which means we’ve turned down many social invitations. We’ve found you can only turn people down so many times before they stop asking you.”   

“Caring takes everything you’ve got.  There’s no way I could walk away from the last 20 years and I’ll do my job to the best of my ability, even though I’ve been grieving for the man I lost ten years ago. I have the most wonderful family in the world, including my beautiful daughter and my amazing husband, although this man is harder because he can’t listen and doesn’t remember anything!”

“The team and other members at Headway are the only people who ask me how I am.  When they first asked me, I was so shocked I didn’t know what to say.  I thought ‘well my heart’s still beating so I must be okay!’

“I wish we could bottle what comes out of Headway Nottingham.  Darren and Kim now have interests and it’s made us all talk again.  We’ve gone from me doing things all alone to being able to go out together as a threesome which we love.  It wouldn’t have happened if we didn’t have Headway.”