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ABI week 2016. A care givers story. ‘He survived’

 

Today’s post is written by @poorlittlenell (her Twitter handle) she is sharing her experience of her sons Acquired Brain Injury that he sustained at birth. This really captures the fear, the frustration and then the blossoming that occurs. I’d like to thank poorlittlenell for sharing such a beautiful story with me.

Trigger warning: contains a distressing description of the birth.

 

The weather that week was unseasonably cold for Sydney in November but as I looked out of the hospital window, sunshine broke through the clouds. I watched a man in Chris Evans glasses make his way purposefully across the car park. Beyond him, vehicles whizzed by on their morning commute.
“Don’t they realise,” I thought, “that the world has changed?”

My son had been born half an hour before. He was not with me on the recovery ward. Only thirty minutes previously, after a nightmarish birth, I had watched him die. Then medical staff poured into the delivery suite. A nurse tore the small alabaster body away from me. Slumped on the delivery table, all I could see was an emergency doctor holding up a pair of heart-starting paddles, the kind they use in medical dramas.
“Clear!” someone instructed.
“This isn’t happening,” I thought. “This type of thing doesn’t happen to me.”
I asked the nurse beside me if my baby was OK but her eyes were fixed ahead, her expression filled with horror. She did not reply.
“Why shouldn’t it happen?” I realised. “What makes me immune from losing a child?”
Ten minutes later, fitting, eyes rolling, my son was rushed to Intensive Care.
They had brought him back from death. He had survived.

Eight years later, on a dazzling October morning in Scotland, I faced my son’s paediatric key worker at the day programme he was attending for his anger issues.
“He has Acquired Brain Injury,” she explained to me, “caused by his oxygen deprivation at birth.”
Mystified, I asked: “What’s Acquired Brain Injury?”

My son’s diagnosis should not have come as a shock to me. From the moment of his traumatic birth, his medical problems had been numerous. As soon as his fits were under control, his high muscle tone and favouring of his left side led to him spending a year in physiotherapy. A skull x-ray for suspected craniosynostosis had come back clear but an MRI scan had revealed him to have enlarged ventricles and possible other brain abnormalities. On top of this, until he was almost four, he was hospitalised at least once a month with his severe asthma. At the same time, he diagnosed with multiple life-threatening allergies. Once these were addressed, his asthma began to improve but by then we had left Australia for a new start in UK, leaving his medical files to take the slow boat after us.
On the day my son was born, I was told there was no guarantee he would ever walk or talk. Later, when he showed the doctors he was bouncing back from death with astonishing aplomb, they reassured me I had cause for cautious optimism. This prediction, at first, seemed to play out beyond my most fervent hopes. While physically slower to develop, my son had vast energy and, apparently, uncanny mental sharpness. When he was a week old, he would follow me around the room with his eyes. At three weeks old, he was smiling, laughing and verbalising. After that, he was never, ever quiet or docile. He was always “on”, every dial in his personality turned to the max. The out-of-control tantrums began at six months old and from eighteen months old he stopped sleeping.

At this point I began to realise that his level of activity, intensity and emotion was beyond a range that could be described as “normal”. But, due in part to us moving house five times, his age and the severity of his other medical needs, the doctors were reluctant to give a concrete diagnosis.

I spent every available moment reading about paediatric conditions, desperate to find an answer for his concerning behaviour. With his hyperactivity, he could have had ADHD but this was not the full picture for him. His intense obsessions, rigidity, heightened anxiety and “ticking” with certain words and phrases, made me suspect he was on the Autistic Spectrum. Yet despite having many social blind spots, he was extremely sociable and capable of strong empathy. Being so intensely curious, he even seemed to match the profile of a Gifted Child. Except that he had never been able to memorise nursery rhymes or learn the simplest of songs. He would forget basic instructions the moment they had been given.
Eventually, it was his aggression that drove me back to the doctors and to Child and Adult Mental Health Services. His frustration had reached such unbearable levels that he would lash out, kicking and punching me up to sixty times a day. He pulled the bathroom door off its hinges and flew into rages where he would smash his toys and throw the contents of his bedroom down the stairs. My journey to have his behaviour addressed led us to the day programme and to his diagnosis of Acquired Brain Injury.

Nowadays I give a wry smile, thinking about my years in the dark over my son’s Brain Injury. When I see a checklist of the symptoms, he ticks every box. He is the Poster Child for ABI, a walking description. His impaired working memory, his processing delays and concentration problems seriously affect his day-to-day life. They mean that although he is currently attending mainstream school, he is nowhere close to receiving an adequate education. He has Executive Dysfunction – the brakes are off on his emotions and anxiety. While he is aware of certain “norms” of behaviour, when he is swept onto the emotional rollercoaster he cannot simply step off. These and his other symptoms are invisible. The outward signs, spotted by those around us, look like weirdness, naughtiness, even delinquency.
“I’m just wondering why you do that?” a small girl asked us the other day, pointing to the ragged sleeves of my son’s school jumper, where he had gnawed the cuffs completely away.
At Legoland, a father with teenage children frowned at us when my son, frustrated by a long wait in a queue, began repeating an inappropriate word at the top of his voice.

A neighbour was concerned and baffled recently that my son, out of my sight for less than five minutes, had failed to warn some younger children away from a dangerous activity. “He’s ten. He should have known they could have been hurt.”
When a person has Acquired Brain Injury, there is a hesitation to explain. I live in dread of his schoolmates discovering the name of his condition and adding “brain-damaged” to their list of insults. On the other hand, when I have been pushed to inform outsiders that he has a neurological disability, I have been met with scorn: “He’s not disabled!” or “Looks fine to me!” Acquired Brain Injury opens the door to a new level of complexity in understanding disability. To have a barely-functioning short-term memory is, of course, different to having barely-functioning legs – yet is, in its own way, as debilitating.

The insulting and dismissive reactions to Acquired Brain Injury are in the minority. The most common response is the one I feel the biggest need to challenge.
“He has a Brain Injury?” The listener’s expression becomes bereft. “But how awful. How sad. How terrible.”
No. My son survived. He is with us and he is so much more than the sum of his brain cells. He has huge energy and enthusiasm, boundless creativity, a sense of humour that has me laughing every time we are together no matter how challenging the day might be. I am frequently left in awe at his tenacity and determination. He has worked unbelievably hard to learn ways to handle his frustration, to the extent that he is no longer aggressive towards me. Yes, the child who would pull doors off their hinges in fits of rage no longer shows violence towards me. I find little incomprehensible notes scattered everywhere that he has written to himself as reminders of Important Things – Important, to him, almost always means Minecraft. School is difficult but despite the stress he is under every day, he keeps soldiering on, with the work, with finding friends, with his allergies, with everything.

I remember the brilliance of the sun on the day he was born and on the day of his diagnosis, a tactless contrast to the darkness of our circumstances. But in my memory, the sunshine has come to symbolise hope. Not a day goes by when I don’t give thanks for my son’s life. To see your baby die in front of you then be resuscitated, to learn he has irreversible brain damage – that is traumatic. The shock will stay with me forever. But the alternative for him was death.
In the ten years since he suffered the brain trauma, one grief has stood out in my mind: “What was he meant to be like? What did the brain damage take away?”
Last week, my son answered this question himself when we were talking about the Science of the Future. I had heard a proposal for a computerised implant for people with brain injuries that could repair the damaged part of their brain.
“If that technology ever came about,” I asked my son, “would you use it?”
“No,” he replied without hesitation. “Because if I did, I wouldn’t be myself.”
I realised then that he is a whole and complete person. My son with Acquired Brain Injury is who he is meant to be.

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ABI week 2016. Chris and Annie. All change.

 

This is a guest post from Chris, a caregiver for his wife of 39 years, Annie. Annie had a Subarachnoid Haemorrhage in 2014. This is his story about finding a new normal after such a devastating event. Thanks to Chris for sharing this with us to help raise awareness.

 

Gone are the days when a visit to my local Pharmacy saw me walk away with a small white bag with Annie and my medication in. When I visit the Pharmacy now it’s generally a large box or two filled not only with Annie’s medication but also various types of much needed equipment and items that have become an every day item.

When I walk through our apartment I am faced with changes to our lifestyle, home and routine. The hall is now a car park or I should say Wheelchair Park, complete with large charger and other accessories. The changes to the bedroom are obvious, Annie’s bed (you hear it before you see it) My single bed. One thing I have always said to Annie is no matter what we will never have single beds, now here we are forced to apart although side by side. Then there is the other equipment, hoist, Annie’s armchair and shower chair. Annie’s armchair lives in our bedroom at night and transfers to the sitting room by day. The bathroom is full of bottles of lotions and potions for beauty, bathing showering, cleansing, moisturising and other things that chivalry prevents me from disclosing. like any other bathroom I hear you say not this one. Then there are the bags, yellow, orange and black and lastly white ones. Then there is the sitting room with one real change and that’s Annie’s pride of place. I remember as a child my fathers chair it had his smell and it had his hand marks on the arms and it sat at the side of the fireplace, when he was home no one dared to sit in it. Annie’s chair as I said moves from bedroom to sitting room and has pride of place, a focal point in the sitting room. Then there is the spare room/second bedroom the bedroom tax room. It’s a store room for the nurses and the carers, it also houses Annie and my wardrobes. Finally the kitchen, the kitchen that we would have shared, the kitchen where Annie would have spent so much time. Its funny it seems that with all the change throughout our little home it’s the kitchen that reduces me to a blubbering wreck, so simple but so poignant. It’s not that the kitchen is where I cradled Annie when she had her SAH but where we would chat, sing, laugh and share life. The kitchen is now my domain, yes I cooked more than in the past, but the kitchen was like out meeting place.

Then there is Annie. These changes are huge and don’t become easy to swallow even two years following her SAH. Annie is quadriplegic and every aspect of her life is supported, however, since her Stoma and Suprapubic Catheter the personal care issues are less stressful for her. Annie tolerates me having to feed her and meal times are quiet. Any distractions can cause Annie to loose concentration and swallowing becomes an issue.

Annie and I have been married for 39 years this year and the things that people in a loving partnership take for granted are lost. So what do I miss? I miss Annie holding my hand, I miss Annie’s cuddles, I miss our closeness and love. There are also things that people don’t understand because again it’s taken for granted that these issues remain constant in our marriage. Conversation and yes arguments are lost in the recesses of Annie’s brain. Annie has lost her ability to initiate, therefore she is unable to start a conversation or an argument in fact Annie can not initiate anything from talking to moving. I miss my friend, lover and Boss.
No one likes change especially a retired Social Worker. Sometimes change is important, lets say “for the better”. As a Social Worker I promoted change, made people change or face at times pretty harsh outcomes. I feel bitter about the forced change that we have witnessed. I resent its power and its ability to mess with Annie’s life and turn my world upside down. Now I must face it and use it to benefit us and not eat us away “Our New Normal” is the tool to make the changes more appealing and give us the encouragement to fight the inevitable changes and use them to our advantage and not get us down.

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ABI week 2016. Heather, a caregivers story

Life is a journey, not a destination – Ralph Waldo Emerson

Today I bring you a brain injury story from a caregivers perspective. Heather cares for her husband who had a motorcycle accident in 2007. Heather talks about how family and relationships can change and fracture but that there is a way to find your new normal as a family unit. I’d like to thank Heather for sharing this on the blog, it’s much appreciated.

In 2006, the morning of 7th June I received a telephone call from the Police to tell me my husband had been taken to the hospital after having a motorbike accident. The female officer appeared sympathetic but fairly positive that my husband had received only ‘minor’ injuries including a broken collarbone. He had been assessed by primary care in accident and emergency and could come home. I arranged child care for my 33 month old daughter and went to the hospital to collect him. The doctors said he was ‘lucky’.

If someone had stopped me at the door and told me that for the next year I would experience the worst year to that point in my life I wouldn’t have believed them – after all it was only a broken collarbone. It wasn’t, of course, I am writing for a Traumatic Brain Injury blog so it can’t be!

I’ll cut a very long and often traumatic story short to tell you where we are today in our journey. My husband experienced a traumatic brain injury, broke his collarbone, broke every single one of his ribs (some multiple), fractured his hip bone, chipped his pelvic bone, fractured two vertebrae, lacerated his side and damaged a kidney (which is now dying). Only the collarbone and laceration were picked up in A&E despite his motorbike helmet being cracked in two. The trauma clinic were thankfully more efficient. My husband’s TBI was diagnosed after his Post Traumatic Stress Disorder (PTSD) had eased; unveiling some behaviour that could not be readily contributed to regular PTSD. It was though, some nine months after his accident. He had received TBI through acceleration-deceleration associated trauma; the force of hitting the van that pulled across his path and caused him to be thrown into the air and career up the tarmac caused his brain to be shaken around forcefully in his head.

Despite all of this we are lucky he survived; he jumped a fraction of a second from his motorbike before impact, we are lucky he was an experienced rider. It is funny how we measure luck; it is usually against the experience of (what has to be conversely) bad luck. What would have been lucky that day was to have left the house 5 minutes later.

It is nearly 10 years since the accident. What a journey! We have a very good neurological unit in Edinburgh and he was under their care for some time – even still if he needs it. The neuro-rehab unit also considers not only the individual but their families too, although it’s limited. This is important because from a carer and mother (of our child) point of view it is not all about how the accident impacted upon my husband. It took a long time for me to appreciate my needs; if you can imagine it was my daughter, my husband, sometimes the cat then me! We all needed to adjust, get to know the husband, friend, lover, partner and father again. We have some lovely friends who have endured us ebbing in and out of their lives, my husband avoids social gatherings at all costs now. Most of those that matter to us understand and some exceptional family members such as my nephew and my dear late Mother. We did employ the services of a childminder for longer than most but it helped with constancy of care; my daughter is amazing at 12 she is empathic, usually understanding (pre-teen style) and has a wicked sense of humour that commands sarcasm to its full (which sometimes escapes her father’s grasp). We as a family have come to understand that we sometimes cannot be that family on the telly or next to us on holiday; especially on short breaks – it’s just me and my daughter as going away for a few days upsets my husband’s routine too much. But that’s okay as we all get a bit of a break to recharge our batteries and we can plan longer breaks together.

Well…. I can plan the longer breaks; it’s one area that my husband finds the most frustrating thing about having a TBI is the impaired organisation and planning, others are rigidity in thinking and implications of decisions – the higher functioning of the brain. Although, there has been an improvement in ten years it is still pretty affected.

This is how we measure luck though – my husband, who has been my ‘other half’ since we were teenagers is still here, he has developed a grounded approach to life and often keeps me grounded too with his alternative viewpoint when I am being all task-focused. He got the opportunity to develop a beautiful relationship with my mother several months before she died – understanding her in ways I didn’t. He has developed a creativity envied by so many in his wood-turning where that attention to detail of his really pays off and he creates the most beautiful wooden work at Tooth Fairy Pots (link blow). My husband also has the challenge of living with three demanding women (I’m including the cat again) and copes better than some men I have known – including those without a TBI.

I have learned to live with the house being untidy, needing tradesmen to do things my hubby once did and listening to myself when I need some ‘me’ time and when we all need ‘we’ time. I haven’t lost sight of everyone’s needs, including my own and this year although I work pretty full-time I also managed to become self-employed to do a bit more of what I enjoy doing. Life is full on but if your foundations are strong then you can build. It has taken ten years, but I guess, we as a family, are just lucky like that.

You can find the amazing woodwork that Heathers husband does by going to Tooth Fairy Pots