ADS
Three years ago, Mike Burton loved nothing more than chatting to his grown-up daughters and helping them out with DIY.An insatiable reader and quiz fan, the 62-year-old manager was a confident, popular man with a string of hobbies ranging from photography to fishing competitions.
Yet today - despite looking healthy and normal - Mike is a shell of his former self.
Changed character: Mike Burton with daughters Julie (front) and Sally. Since his heart attack, Mike has struggled to communicate with them
'He talks very little and struggles to keep up with the conversation,' says his devoted wife Christine, 59, who lives with Mike in Livingstone, West Lothian.
In March 2010, Mike had a massive heart attack on the sofa while watching football. Paramedics resuscitated him, but the attack left his brain starved of oxygen for up to 19 minutes.
These crucial moments caused irreparable brain damage, leaving him with permanent memory loss, severe fatigue, and a changed personality. As a result, he will never again be capable of leading a normal life.
'It's like someone has taken your husband away and brought home a completely different person,' says Christine. 'I miss the little jokes we used to have.'
It's estimated at least one million people in Britain are living with long-term disabilities as a result of a brain injury. Experts predict that these numbers may be set to rise, as advances in medicine mean more people are surviving events such as stroke and heart attack.
Many can be left with brain damage that completely changes their personality, meaning their lives and those of their families are irreparably changed.
Christine first noticed Mike was very confused when he was in hospital following his heart attack. His heart was recovering well, but doctors warned her he may have some problems with short-term memory, but they were unable to say how serious these would be.
After the heart attack: Even three years later, Mike, pictured with his devoted wife Christine, has not recovered his mental faculties
But when they got home it became clear Mike had suffered severe, long-lasting damage.
'Soon after he came out of hospital we had to remove all the dials from the front of the oven as he'd turn the gas on then forget about it,' says Christine. 'And he tried to make beans on toast and put the bread in the microwave instead of the toaster.'
Even getting up and dressed in the morning proved a struggle. 'He sprayed deodorant on to his face instead of his under arms, and would shower, clean his teeth, then get straight back into the shower again, as he forgot he'd already done it,' says Christine.
'We soon realised that we had to prompt him to do every single thing, as otherwise he'd end up doing it over and over again.'
In December 2010, Christine decided to give up her job as an office administrator and become Mike's full-time carer. 'His brain injury was so severe that his short-term memory span is only a couple of minutes, so it soon became clear that he would never be able to work again,' she says.
Once outgoing, Mike is now withdrawn and finds socialising difficult. 'He tends to shut off. He worries about people asking him things he can't answer so he doesn't say anything,' says his wife. 'He runs out of things to say and people end up feeling uncomfortable.'
He used to particularly enjoy chatting to his daughters Sally, 32, and Julie, 30, 'but now he finds it very difficult to hold a conversation. He's always pleased to see them, but doesn't talk too much. They miss their father in many ways'.
'Soon after he came out of hospital we had to remove all the dials from the front of the oven as he'd turn the gas on then forget about it.'
Around 280,000 people are admitted to hospital every year with brain injuries - caused by head injuries, strokes or hypoxic injuries, where the brain is partially or totally starved of oxygen. Hypoxic injuries have a number of causes, including heart attack, acute asthma attack, electric shock or smoke inhalation.
Advances in medical science now mean that patients generally receive excellent care during the initial stages of a brain injury, says Peter McCabe, chief executive of the brain injury charity Headway.
'People are put into a specialist neurological unit and very often lives are saved,' he adds. 'It's what happens afterwards where the problems begin. If you save someone's life, it's got to be a life worth living. If you toss people back to their families without adequate support, it all falls on the family. The consequences can be disastrous.'
Patients and families frequently struggle to adapt after a brain injury, explains Dr Richard Greenwood, a consultant neurologist at the National Hospital for Neurology and Neurosurgery in London.
'Although the person superficially appears “normal”, underneath they might have residual problems which are not visible to others, making it a “hidden handicap”.' He says personality and behavioural changes are often the most difficult issues for families to handle, and may make a patient seem like a different person.
Strained postscript: It's what happens after operations where the problems begin. Patients and families often struggle to adapt after a brain injury
'Many marriages don't survive a brain injury,' says Peter McCabe. 'It can turn people's lives upside down in a second and can have an impact that goes way beyond the survivor.'
And well-meaning comments from friends and family can make the situation worse, says Jo Johnson, consultant neuropsychologist in West Sussex and author of the book, My Parent Has A Brain Injury.
'People can hail the injured person's recovery as miraculous,' she adds. 'They think everything is great when it really isn't.
'This can make partners feel they are going mad and are to blame for not being able to cope, and they can go on to develop physical and mental health problems.
'Often people are very happy when the person first comes home and it feels like it's a miracle. A year to 18 months in and there is a realisation that the person they once knew is not going to come back.
'The personality changes can be colossal. People become quieter but also sometimes more uninhibited - they might swear much more. Couples can become excluded and stop getting invites to parties.
'Some women even tell me their children stop being invited to friends' houses because the friend's parents find it too awkward to meet the dad when he picks them up.'
She explains that this can trigger a type of grief in the partner. 'You've still got a man who looks the same to everybody else, but you feel your husband is gone for ever. People have to get to know that new person and see it almost as a new relationship. Some people seem able to do that, but others just can't.'
'Often people are very happy when the person first comes home and it feels like it's a miracle. A year to 18 months in and there is a realisation that the person they once knew is not going to come back.'
'The services are totally patient-centred. Psychological support should be offered to the families as well as the person who is injured, because they can sometimes be more traumatised than the person is.
'Often services will not see families if the patient does not consent - but this can be because the injured person lacks insight into the seriousness of their condition.'
Peter McCabe adds that specialist rehabilitation services are very patchy: 'Some areas have very good community brain injury teams and some have none at all.'
A recent survey by Headway revealed just 7 per cent of patients with brain injury were receiving any help from social services. And a lack of proper help is certainly something that Mike's family has experienced. 'We did have visits from a social worker but they couldn't really help because Mike needs someone with him all the time. I assume he'd have to go into a nursing home if I couldn't look after him,' says Christine.
'But it's very difficult. We've lost two salaries, so there's the stress of looking after Mike with financial worries added on top.'
Unsurprisingly, Christine's own health has also suffered. 'I feel that looking after Mike saps all my energy,' she says.
She also sleeps badly because she is always on alert. 'I might hear the taps running in the middle of the night, as he's got up and started having a shave,' she adds.
This is a situation that 31-year-old Liz Boyd recognises only too well. Liz's 40-year-old husband Mark suffered a brain injury as the result of a stroke. The wise-cracking man Liz married was replaced by a bitter introvert, suffering from deep depression. 'It's totally changed our lives,' says Liz, who lives in Worthing, Sussex, with her husband and their two young children, George, six, and Freddie, three.
'People always say Mark looks so well, but they don't see what goes on inside.'
Mark suffered a brain haemorrhage in June 2011 and underwent a five-hour operation to repair the tear in his artery that caused it.
Initially, he made good progress and after just three-and-a-half months began to make a gradual return to his job as a salesman for an automotive components company. However, it rapidly became clear that all was not as before.
'His short-term memory was pretty bad and he'd struggle to cope if there was more than one noise going on at a time, like if Freddie was babbling and there was a car alarm outside,' says Liz.
'He would also do quite weird things especially in the first six months, like putting car keys in the recycling bin, milk in a cupboard and cups in the fridge.'
And he began to fixate on problems. 'The Christmas before last one of the boys got a puzzle and a piece was missing. He turned the whole house upside down desperately trying to find it,' Liz recalls.
Mark became increasingly depressed. 'He became very self-centred and obsessed with what he couldn't do. He was low all the time and would keep crying. Eventually it took me saying that I was leaving him to make him go and get help.'
Mark has since started on antidepressants and the couple had counselling with a neuropsychologist, who specialises in patients with neurological conditions and head injuries. This helped Liz to see some positive aspects to her husband's changed personality.
'No, he's not the man I married, but he's also more caring and family-minded than he used to be,' she says. 'Perhaps it's brought us closer together in the long run.'
But while the counselling was 'invaluable', the couple had to pay for it, and Liz believes it should be available on the NHS to all families learning to live with a brain injury.
'It has helped us tremendously - this kind of help should be freely available to anyone in our situation,' she says.
ADS
No comments:
Post a Comment