The impact of brain injury on loved ones
"Having to transition from wife to carer in the matter of a morning requires adjustments. I feel loved ones need the help and support as much as the survivors, as they have to live with the brain injury just as much as we do.
My wife and children have been my rock through all of this.”
Tim Samples said his wife Michelle’s role changed in the matter of a morning after he suffered a series of epileptic seizures while he was driving his daughter to school, in 2005. It was not until a year later that he was diagnosed with a benign brain tumour after initially being misdiagnosed.
The couple, who have two children and two grandchildren, say their advice to a loved one of a brain injury survivor is that they also need strong support as its impact ‘ripples’ through the family.
Networks, keeping hobbies and interests, and looking after their own health, are vital tools.
Tim, 48, adds: ” From my experience I know I didn’t thank my wife enough for all she did for me at the time and if you are reading this and think it is the same for you, please let them know that it is greatly appreciated.
They need to take time to look after themselves. It’s easy to forget this when everything is going on, but you can easily burn yourself out. If you have a hobby, try and take time to do it.”
Last year Tim’s story was featured in SameYou’s Survivor Stories and Tim became an Advocate for the charity, collaborating with brain injury survivors around the world to raise awareness of the need for rehabilitation.
Both Tim and Michelle say it’s essential to search for any support networks nearby – and to both be involved. Since Tim’s brain injury, as a couple, they have spoken publicly about their story at healthcare conferences, highlighting the effects on survivors and loved ones. They also say to make time to do activities together and try to live as normal a life as you are able to, as it’s easy to let the brain injury define you.
Michelle, 55, said when Tim was first unwell she didn’t know anything about the brain – or how it would affect them all as a family.
She added: “’The best piece of advice I was given in the early days, was ‘keep going you’re doing a fantastic job’.
And I would say, keep fighting – you know best, you don’t have to listen to doctors if they are being negative or not listening to you.
“I found it really affected my life when it happened. I became the only driver and not only had to take the kids back and forward to school, I had to take Tim everywhere.
“The kids became carers for Tim and it felt like I had 3 kids to look after. He often had to say he couldn’t come out with us as he wasn’t feeling well, so family time didn’t happen.
I really can’t remember any highs back then. I was constantly fighting for everything. To get Tim seen by doctors who believed him and to get him rehab. I’ve not known a time I have not had to fight for something for a family member.
“In hindsight I would shout louder. If you get turned down for a service, benefit or something else and you believe you are entitled to it, appeal. It might take a long time, but it will be worth it in the end.
“It’s also so important to look after yourself. My grandad died and left me some money, so I bought my first ever horse. Maggie, she gave me back my life. I had to go to the yard twice a day, and still do. It keeps me active, helps me get up in the morning and gives me something for me.”
Tim says Michelle’s help was essential in the early days as their support was non-existent, aside from their family GP, due to the misdiagnosis of epilepsy.
He has now completed a peer support and counselling course, so he can work with other families who are going through similar experiences and challenges after brain injury.
He adds: “As I was misdiagnosed there was no support we could access. This really impacted my mental health; I felt like a failure and was made to feel like I was making up my symptoms by the neurologist I was originally under. It didn’t help thinking there wasn’t any support I could ask for, so Michelle had to bear the burden of my care and support.
I found it hard to accept the new me, I focused on all the things I couldn’t do, this impacted my mental health.
“I know this might sound odd, but one of the biggest highs was when I got my full diagnosis. It turned out I have two benign brain tumours and a hypoxic brain injury and this explained why I was suffering from all these symptoms this also finally got me referred to the brain injury team who explained what and why I was suffering from all these problems.
“They also referred me to my local Headway, they not only helped me with my rehab but one of the best things is that they are also there for my wife if she needs someone to vent off to. Another high point was getting my driving licence back this enabled me to get some independence back.
“A proud moment was when I was asked to do a presentation at a brain injury conference speaking about living with a brain injury. This gave me a big confidence boost. I have done a number of talks now and so has my wife. The feedback we have got is amazing, giving me a confidence boost that has spurred me on to try and do as much as I can, not only for those with a brain injury, but also for the loved ones who I feel need just as much support and quite often get forgotten about.”
He adds: “I cannot express how grateful I am for everything Michelle does for me - she has been my rock and she still is.”