When a brain injury survivor returns home from hospital their loved ones often believe life will get easier, get back on track. Afterall, the agonising visits to the hospital have come to an end. Surely it will mean life might feel normal again?
Sadly, for lots of families this isn’t the case. In fact for many it's only when their loved one finally returns home that the true realisation of what has happened to them comes crashing down into everyone’s lives.
Yvette Lumley experienced this when her husband John returned home after his treatment. John sustained his injury doing something that was very typical of his character - trying to help someone.
In 1997, John was out riding his bike when he witnessed an assault. He pursued the attacker while at the same time trying to alert the police on his mobile phone, but in the all the drama he didn’t see a speed bump and went head first over his handlebars and smashed his skull on the road.
He was helped home by a young couple, and on seeing him, his wife Yvette decided he needed to be checked over in hospital.
She said: “At first he seemed OK but on the way to hospital he started asking me what we had done that day, where we had lunched, where he sat, what he ate."
During all this the time he was getting angrier and angrier at my answers and my lack of detail. He later described it as he felt like his brain was falling through a hole and he was scrabbling to grasp the sides.
Unfortunately, the care John received at the hospital wasn’t good. He was placed on an orthopaedic ward with a suspected broken neck and released two days later. Nothing was carried out to assess if he had sustained a brain injury and when he got home things got worse.
“He was in agony, extremely light sensitive and his anger was increasing. After a couple of days I took him back to A&E where I politely but implacably told them something was wrong,” recalls Yvette.
“They insisted he was fine and it was a normal concussion. I too insisted that if he was remaining the same I would agree but he was getting rapidly worse and his character was changing. To which the doctor replied, ‘Well Madam the only thing it could be, Madam, is a subdural haematoma Madam, and if he had that Madam he'd be dead.’
Again, I apologised if I was in anyway appearing difficult but I was certain that there was something happening. At this point he started vomiting blood!
"God love him, as he was being wheeled back from his long overdue MRI, whilst his head was in a sick bowl, he open one eye and said, ‘Nobody likes a smart arse!’ He did indeed have a subdural haematoma.”
John received intensive hospital care but once he was home it was clear to Yvette that life had changed forever.
She said: “To begin with, John slept 23 hours a day and during that hour of consciousness he would go from not being kind to getting nastier and nastier. He couldn't cope with the children being in the house.
“It was very difficult to care for him and protect my children from him at the same time, let alone deal with my own feelings of loss. He was still the Daddy they adored but he now seemed to hate them and me. As he 'got better' it became even harder as our exposure to his unbridled anger was increased.”
Thankfully, after a couple of months John was referred to a neuropsychologist and things started to improve.
Yvette said: “She helped us come up with rules and systems to help John and I cope and how to make his life bearable and the family's time together safe. I think the most important thing we learnt was rest. Most illnesses you can push through, you're taught to keep going and to tough it out. Not with a frontal lobe injury.
The neuropsychologist talked about a glass ceiling, the ceiling being where you go from being Ok to being tired and ill-tempered. Each time you push through the ceiling it lowers on you, and so next time you will get to the difficult place sooner.
"Each episode then becomes like a vicious cycle, arrives sooner and becomes more unpleasant as they struggle not to go backwards.”
Yvette said John’s mental health was also very fragile.
She said: “I think depression is the monkey that sits on brain injury survivor’s shoulders and we worked hard to make sure it didn’t undermine John's achievements. We learned to stop anything and everything when he started getting grumpy and for him to go off for a rest for just 15 minutes. When I would wake him up, often with a cup of tea, the ceiling had risen again.”
Yvette said that inevitably all these changes had a big impact on their family life and marriage.
She said: “It’s no surprise so many head injuries end in divorce. Having been married to such a loving man and then finding him being verbally abusive to you because you’re late bringing him his newspaper, well that is going to put a strain on anyone.
“Another difficult thing is the lack of understanding. The hidden side of brain injury can make it appear that everything is OK to people outside the family which means that there isn't a great deal of sympathy or support. I took my marriage vows very seriously, but when I said in sickness and in health, I was thinking that it would be the same man just incapacitated, not this whole new person.
“But I knew If I could come through this I could get through anything.”
Yvette said although brain injury affects everyone’s relationships differently, she would always recommend meeting up with people who are going through similar experiences.
Community is vital in life and you can't expect people who aren't living with it to understand what you are going through. Talking to people who do understand is very comforting.
“It can be brutal when you loved one gets a brain injury but you have to keep going. John is largely the man that I married. If he gets tired he can start to get grumpy but then we know the warning signals. With all the upheaval, all the battles and challenges – we are still happy and that is the main thing.”
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