Narelle Hawkins

PARENT OF SURVIVOR

My Son has a Brain Injury…a Traumatic Brain Injury, to be precise…no let me rephrase that…a very severe Traumatic Brain Injury in fact.  This probably doesn’t mean a lot to most people, I know 5 years ago it would not have meant much to me…but now I know all about it…I know too much in fact…I have read and researched and read some more, there is no cure, there is no light at the end of the tunnel for us – there is no silver lining –  this is what it is and there is very little we can do about it.  

Oh, don’t get me wrong, I will keep trying…. quality of life for Todd is very important to me, so I will keep getting in peoples faces whenever I need to, to make sure he gets all the help he needs.  I will keep trying to educate people, because unfortunately when people don’t understand something, they tend to pretend everything is alright.  Well it’s NOT alright… our lives have been irrevocably changed…we will now need to care for Todd for as long as we are able, and then…I don’t know…what happens to him when we can no longer look after him?  What will his life become then?  It doesn’t bear thinking about, so we will just press on and hope that we have many years ahead of us.

Saturday 13th November, 2010 – a date that will be with me for as long as I live.

It started out as any other day – and by the evening, Todd’s girlfriend Laura and I were sitting watching a movie while the boys were in the pool room having a game and a couple of beers.

Suddenly Todd’s bike roared to life and he took off down the street.

Now, Todd never rode his bike at night – it had a faulty headlight – so straight away Laura and I were uneasy.  Something had happened…we will never know what prompted him to get on his bike that night, but he has no memory of it and probably never will.   After 10 minutes, Laura and I both reached for our phones and tried to ring him….no answer…the feeling of dread worsened with each passing minute.  It was probably only  another 10 minutes or so when there was a knock on the door…every parents worst nightmare…a police officer knocking on your door at 10.00pm!!!!

We were told that there had been an accident, and Todd was being taken to Liverpool Hospital under police escort and we should get straight to the Hospital.

You didn’t need to tell us twice!!  We were in the car and on our way in a matter of a few minutes.  Doug stayed behind to ring our other sons and the rest of our family to let them know what was happening.  I don’t know to this day how I managed to drive to the Hospital…I guess I was on auto pilot – but we managed to get there in one piece.

We were taken straight in and a social worker came in to speak to us.  Todd was in a very bad way, she suggested that we call the family to come in straight away.  This was not good…this was more than a few broken bones…this can’t be happening…not to my family!!  You read about these things happening to other people, but never imagine that it could happen to you, to your loved one.  

I think back to that night now, it seems so long ago…5 years in fact…but it also seems to be so fresh in my mind as if it were only yesterday.

How do you absorb this type of horror as a parent?  How do you stay calm when you don’t know if your child is dead or alive?  If he is paralyzed or worse still…never wakes up?

I remember being cold…so very cold…someone wrapped a warm blanket around me, I guess shock had set in by this point.  All I wanted to do was see my boy…to make sure he was alright…but they kept saying they were still cleaning him up…won’t be much longer now Mrs Hawkins…you can see him soon…..I wanted to scream!!!!  Just let me see him, I need to see him now!!!  I need to see for myself.

Well , I can tell you, reality is quite another thing.  When the time came to be taken to him, my feet wouldn’t move.  Doug had to pull me along.  Now I didn’t want to face what I might see. I didn’t want to see my son’s broken, bloody body lying on some hospital bed.  This can’t really be happening!!!  It’s all just some terrible mix up.  Someone please tell me this isn’t real?

Well, it was real – something I never want to live through again – something nightmares are made of.

Todd was lying on a hospital bed…blood oozing from what seemed to be everywhere.  He was unconscious and we were told he had suffered a very severe brain injury.  This meant very little to us, he was alive, that’s a good thing?  Right?

They told us that he was being put into an induced coma, there was a lot of swelling to his brain, apart from all his other injuries – so this was the best thing to do. He would be moved to intensive care, and we could see him when he was settled.  His brothers came in one by one, then his best mate and of course Laura.  None of us really understood the ramifications of that night.  How could we?

We had no idea what was about to unfold…all we knew was that he was alive.  But at what cost?  This was going to be a real test for all of us, we just didn’t know it then.

Todd had hit the back of a large truck, just around the corner from our house.  He was wedged upright in the back of the truck. Luckily, a lady coming out of her drive saw him come around the corner with no headlight and saw him hit.  There was no sound…if she hadn’t seen it happen, he would have died right there and then.  She called her husband who ran out and removed his helmet…the strap had crushed his larynx and he was choking…he held him until the ambulance got there.  This man saved my son’s life.  I can never repay this debt, only be eternally grateful for his quick thinking and selfless act.

The full impact of  the accident  was to his face and head.  He had a broken jaw, broken nose, fractured eye socket, multiple contusions, many, many other fractures to his face, fractures to his spine,  but the unseen damage was the damage to his brain.  We would soon learn all about this ‘invisible’ injury.

As the ambulance drove away, they were performing CPR on Todd – apparently they brought him back a couple of times.  It was definitely not his time to go.

Toddy spent the next 2 months in Intensive Care.  They took him off the drugs that were keeping him in the coma and after 2 weeks, he was awake.  Let me tell you, those two months were the longest two months of my life.  I would work until 12.00 and then go to the hospital. I would sit by his bed willing him to wake up, but scared of what I might see if he did wake up.  The nurses would shake him and loudly tell him to wake up.  I left ICU many, many times in tears. While he was sleeping, he was healing…why couldn’t they just let him sleep?  I didn’t want to face the reality of what was happening. It is definitely NOT like you see in the movies… when you come out of a coma, it is a very gradual thing. It doesn’t happen all at once.   First he opened his eyes, but he didn’t really seem to be registering much. Todd was in post traumatic amnesia (PTA) for 101 Days.  Anything over 7 days is considered to be very severe and the longer a person is in PTA, the longer it takes them to come back, so we knew we were in for a long, long journey.  It probably was another week or so before he could do little things, like squeeze our fingers when asked to, or blink when asked a question.  He couldn’t talk because of the Trachy, so we still were unsure of what we were dealing with.  Maybe they were wrong?  Maybe the damage wasn’t as bad as they first thought? Maybe…maybe…

Each day as I drove to the Hospital, I would feel sick to my stomach at the prospect of what I would find.   Would he be having a good day?  Would it be another day filled with worry?   Todd was on life support – he had tubes and wires everywhere.  They  drilled a burr hole in his head so they could monitor the pressure on his brain…he was leaking brain fluid from his nose…he had a trachy in to help him breathe…he had a central line,  a feeding tube,  there were literally wires and tubes coming out of him everywhere.  The hardest part of those first couple of weeks was watching the pressure rise in his head.  I was glued to that particular screen as I watched it go up…and then it went down…up and down…up and down.  It seemed relentless.  Everytime the pressure went up, I expected nurses and Doctors to come running, but everyone just kept going about their business.  I guess I was the only one obsessed by it. The day they felt it was no longer necessary to monitor the pressure, and removed the tube, was our first  small celebration.

But the worst was yet to come.  As I said before, it is not like you see in the movies…patients don’t just wake up smiling and talking. There were hallucinations, he would thrash about and pull his tubes out – we lost count of the times they had to take him away to have everything put back, in the end the staff decided to restrain him…he was tied to the bed.  It was gut wrenching  listening to him begging us to untie him…he would yell and swear and spit….this went on for weeks…. a combination of the head injury and coming down off the drugs….it was not very pleasant, let me tell you .There was also,  of course, the disorientation and confusion

– not knowing where he was or what had happened and of course the constant agitation.   Then one of his lungs collapsed, he developed pneumonia, bed sores …there seemed to be one set back after another. Everytime we got out of intensive care, something would go wrong and we would end up back there again.  We began to fear that we would never leave!!! Then there were the surgeries… the first to drill the burr hole in his head to monitor the pressure on his brain,  then the surgery to insert the trachy to help him breathe ….then the 5 hours of surgery on his face to repair all of the damage.  He had also broken his left arm, which wasn’t picked up until later, so he had to have it re-broken and had a bone graft and pins and plates inserted.  His right eye was badly damaged, so it was surgically closed.  We had hoped that they may re-open it one day, but sadly this was not to be, the damage to his optic nerve was too great and the nerves in the right side of his face were also damaged.  He has never regained sensation to the right side of his face, so his eye doesn’t blink properly and therefore dries out, the cornea becomes ulcerated and it causes all kinds of problems.

.Well, life for me became work and the Hospital.  After a few weeks, I would work until 4.30 and then begin my other life .  Laura and I had a system, I would sit with him, stroking his head to soothe him and rubbing cream into his poor hands and feet – the skin was just falling off because of all the drugs keeping the fluid from collecting in his lungs.  I would sit there and try and calm him as he yelled, screamed, spat and said horrible, vile things – I knew he couldn’t help it, but it brought me to tears many, many times. It was exhausting…. Laura would then take over and I would go home, in an effort to summon the energy to do it all  again the next day.  The sad reality of situations like this…nobody else wants to step up and help.  Is it the words ‘brain injury’ that stops  people?  If it had been any other type of injury, would people have reacted differently?  Been there for us?  I could count on my fingers the number of visitors Todd had, in what was to become 8 long months in Hospital.  After the initial shock…the phone calls petered out and we were left to cope on our own.  I am thankful that Todd aimed most of his aggression at me…Laura only got the worst of it on a few occasions.  I am in awe of how well this young girl coped during a time that she could never in her wildest dreams have imagined.

Our next big step was to gradually wean him off the ventilator.  This was done very gradually over a long period of time.  First 10 minutes at a time each day, then an hour each day,  then two hours etc.  It was really very frightening at the time.  Sitting with him watching  that the next breath did, indeed happen.  I remember holding my own breath many times when it looked like he was faltering – but eventually, after nearly 2 months, he was breathing totally on his own and the ventilator was disconnected.  The trachy was left in, just in case for a little longer, but was removed a couple of weeks later.  Another celebration!!

The final step was removing the feeding tube (actually I think he did that himself  – again!!).  I think they got tired of putting it back in.

He was started on pureed food which we fed to him at first.  I remember so clearly the first time he took the spoon from me and fed himself.  It took me back to when he was a baby and first fed himself.  He had food all over his face –  we spent more time mopping up the food  – but after a few days, he got better at it  and  he could feed himself – still took quite a while before most of the food went in his mouth – but it eventually happened.  Again….another small celebration.

It was very important to celebrate these small achievements.  They may seem small now – but at the time, each tiny step forward was a huge accomplishment.

By the time he left intensive care, he weighed just 42kgs.

It was almost 3 months before he was able to eat solid food.  We were finally getting somewhere!!

After a couple of failed attempts, we finally got out of intensive care… he had destroyed his pituitary gland, so we now had to cope with getting all the medication right to replace everything that is usually dealt with by this very important gland.  He had developed diabetes insipidus…which is a sodium imbalance.  If his sodium got too high, he could have seizures….if it got too low he could have seizures.  He was put on medication and a strict fluid intake to control this.  He was put on a myriad of medications for all the other deficiencies and finally we got transferred to the Brain Injury Unit.  This was the first bright spark in what up until now had been a horribly sad time for all of us.  One of the common side affects of a brain injury is depression.

Deep, uncontrollable depression.  He cries all the time…as time has passed, this has become easier to handle…but it is never-ending nonetheless. Todd spent a lot of time in the BIU wandering up and down the hallways, crying uncontrollably.  He would beg me to get him out of there….every day we would go through the same thing…every day I would explain to him that he couldn’t come home yet, he still had to heal…this went on for weeks, he could not understand this sadly…he was still in PTA at this stage, he didn’t know what day it was, whether it was morning or night, the date, the year…. all basic knowledge to us, but Todd still wasn’t at that stage.  He has cognitive problems, severe short term memory loss…he has retrograde amnesia – he cannot remember the 5 years prior to his accident, this has never come back.  He has damaged parts of his brain that control his emotions, his ability to reason…and be reasoned with…his decision making and planning, his ability to control his body temperature…. just to name a few….we have learnt to walk away when he is having one of his meltdowns, usually he calms down and within a couple of hours he has forgotten about it.  The Son we knew has gone…in his place, there is this new person, totally different from the Son we knew, but he is still our Son.  

Because of his lack of short term memory, Todd has never moved on.  This is very hard to deal with.  It is, to him, like it happened yesterday. He struggles to retain  memories – so time has no real meaning for him. We know it has been 5 years, but to Todd it only just happened.   The world around him has moved on but he has not.    He cannot understand why he never sees his friends anymore, he has no memory of  various friends’ weddings he attended…. most of them happened during the period of time he has lost …. he cannot understand what he did wrong to lose his beautiful Laura…it all became too much for her, she had to walk away.  He cries every day  because his life has changed…his bike is gone…his job is gone…his girlfriend is gone…his friends have gone…how would we cope if we literally woke up one day and found that everything had changed?  That life as we knew it, was no more?  I cannot even begin to imagine what that would be like,  so I cannot judge him.

The next 6 months was spent trying to get him stabilized and ready to come home.  We applied for, and got acceptance into  the Lifetime Care Scheme, which has been a godsend, let me tell you. They take care of everything accident related – from Doctors, medication, therapy, his attendant care workers and a whole lot more.  We certainly couldn’t have survived this far without them.  Liverpool Brain Injury Unit is an amazing place, and on the whole, the staff there were wonderful. They were very patient with Todd.  Todd had physio, speech therapy, occupational therapy, he sees a psychiatrist, a psychologist, he is under an Endocrinologist,  a Brain Injury doctor, he has 8 weekly blood tests to monitor his sodium, 10 weekly testosterone injections,  everything needed to help him manage once he was discharged into our care.  Which in itself was probably the most daunting part of this whole experience.  Up until now, there were trained professionals taking care of everything.  Suddenly he was handed to us and we had to take over…something we were nowhere near trained to do. How do you deal with someone who has no short term memory, who cannot remember something he did just 5 minutes ago? Who sobs and cries every day?   Who cannot plan the most basic things? How do we deal with any medical emergencies?  What if he has a seizure?  What if we do something wrong, or if he wanders off because we didn’t watch him closely enough? We had no experience, no training…it has been hit and miss…I know we have made mistakes along the way, but we have done the best we can.  Now that he is home,  Todd has carers during the day while I work, and then Doug and I take over.  Each day brings a new challenge which we deal with as best we can.

Our struggles each day are not obvious to anyone else.  Others see what appears to be normal family life – Todd is out of Hospital, everything is back to normal.  After 5 years, people have moved on – we, however are stuck in this ‘time warp’.  Brain injury doesn’t go away, it just hovers there in the background.  Others don’t see the daily frustrations that we encounter….even on what we think has been a good day, in the blink of an eye it can change….one minute happy, the next minute frustration and tears, yelling, banging on walls…the whole nine yards.  We walk on egg shells every day, being careful not to do anything that may set him off…it is very wearing trying to continually be upbeat, even when you may be having a bad day yourself, but it needs to be continuous, as he senses any tension and he then becomes upset.  It is  usually necessary to back off and walk away when this happens, as he cannot be reasoned with, and trying to do so usually leads to a worse situation.  He has word finding issues, which causes no end of frustration for him, he gets angry, which only makes it worse….then, by the time he calms down, he gets upset because he cannot remember what he was talking about in the first place.  He gets angry because he remembers things differently to how they happened…he gets very vocal, as he is adamant that his version is right….his short term memory is extremely bad….he gets angry because he cannot just go and do all the things he used to take for granted…he is quite oblivious to his deficits unfortunately…..he has no idea just how different he is now….he cries because something as simple as going to the pub for a beer or to watch a band cannot now be done unless someone is willing to take him, and the offers are very few and far between. His concentration span is very, very limited.  Getting him interested in anything at all is a challenge in itself – so finding things for him to do to fill the long hours each day is very difficult.   Most Saturday nights, he goes to bed at about 7.00 and cries himself to sleep.  This breaks my heart….but I cannot force his friends to take him out – so I listen to him cry and hope that he falls asleep quickly……you think I would be used to it by now, but I am a Mum…. you never get used to your child being upset, no matter how old they are.  Yes….to everyone else, life goes on….at the end of the day, even the health professionals get to walk away …..we don’t get that luxury  – there is no end in sight for us.

I find that I am tired all the time…so very, very tired…it has taken it’s toll on me – I certainly haven’t emerged from this unscathed. It is all I can do each day to drag myself out of my bed.  I cry a lot, the grief and the hopelessness is with me every day.  I am perpetually sad.  Knowing that my son will never work again, will never marry and have children, will never be independent….this breaks my heart….it is a lot to deal with.  But deal with it, I must.  I have no choice – Todd needs me to be strong for him.

 Then there are the endless Doctors appointments, making sure I don’t double up appointments, the endless trips to the Chemist for his tablets, making sure his tablets have enough repeats ….keeping on top of the referrals…the blood tests…..the list goes on and on.  Add to this my job, all the washing, ironing, cooking, cleaning, shopping, bill paying….it’s no wonder I am tired!!!  And  my lack of social life.  My friends, too, have left.  I am on my own. I no longer go on trips away with the girls, I no longer get invited out –   my freedom is gone.  I have no one to talk to who could possibly understand what my life has become…caring long term for a loved one is very, very lonely and isolating.  I also find the guilt hard to deal with.  I feel guilty that I could not protect my son, I feel guilty for feeling angry at him for bringing TBI into our lives, I feel guilty for not having the answers!!! I feel guilty for not being able to do more for him. I feel guilty that the rest of my family has had to take a  back seat during this time.  I feel guilty for a lot of things, which I know I have no control over.  I can’t help it unfortunately. The loneliness and isolation…the guilt…the sadness…the frustration – all of these things are part of my everyday life now.  There are support groups for almost every type of illness and injury, but very little support for Carers of brain injury survivors.  We are pretty much on our own. If there is one flaw in the system – this is it.  Before Todd was discharged from the BIU – there should have been somebody to sit down with us and explain what to expect, how to deal with his many deficits, the best way to handle him when he gets upset, when his depression overwhelms him  –  what to do when he becomes agitated – how to redirect him  –  how important our role in his rehab is.  We are the ones now responsible for his mental and physical well being after all.  We have no medical training, no understanding at all of brain injuries apart from what we have read. Brain injuries are very complex – no two people with a brain injury are alike – it is  all dependant on where the damage has been done – what part of the brain has been affected – whether it be speech, the ability to walk, or in Todd’s case, frontal lobe damage – which means although he looks quite normal –  the damage is still very, very significant – it is just not apparent to others.

I have been very fortunate in that Todd has had a wonderful Therapist  who has been willing to give me some insight into this ‘mystery’ that is Brain Injury…. to tell me why he struggles with so much…. explain to me what I can realistically expect…. how to redirect him when he is having one of his many meltdowns…. to walk away when he gets upset.  Without her guidance, I would simply not have known what to do, how to handle the situation in the most effective way – it is a very constant problem and this is a very important issue.

I worry that maybe if I had had more information available to me, could I have done more?  Done things differently? If I had had someone  to turn to for answers, could I have handled some of the more stressful situations better? There is no-one.   Perhaps Todd would be further along in his rehabilitation. Have I done everything possible for him?  I struggle every day with this, but I do know I have done the very best I can with the limited knowledge I have, so I must be content with that.

I have also learnt that most people don’t really want to know, so when I am asked how we are – I usually answer with ‘we’re fine thanks, how are you?’  I have found that if I start to tell them, I lose their attention pretty quickly, so I don’t bother anymore.  It’s quite sad really.

But finally –  on a positive note – I can now afford to take a step back and look at what we have been through over the last  5 years…….. all the sadness, the grief,  the heartache, the uncertainty, the tears and the fear –   and I now see that the hope, the joy, the relief, the achievements and our overwhelming pride, more than outweigh all that we have endured. After what my Son has been through  – the obstacles he has faced and overcome….. I am so very, very  proud of what he (and we) have achieved.  At how far we have come.

It has certainly been quite a Journey.

The severity of his injury was such that he could have been left in a vegetative state…the fractures to his spine could have meant that he never walked again. He can walk, talk, feed and dress himself – he is pretty self sufficient really, his poor  memory, cognitive issues and  his depression  are our biggest hurdles.  But I feel confident that we can continue to see some improvement, for what I hope is a very long time. I have accepted that Todd will never be as he was before his accident, but we will do our very best to ensure that he becomes the best he can be.  It will always be a struggle, but we will get there.

I must say also that we are very lucky to have such a great group of Carers… they do a lot each day to ensure that Todds  life is bearable.

 It is a far cry from the day in Intensive Care when a totally insensitive Doctor told me that once we turned off his life support, he would not survive.  How I would like to show her my son now – and all that he has achieved.

I know our lives have changed, but it could have been so much worse.

We have a long and difficult road ahead of us, God willing, it will be many,  many years –  no doubt with a lot of uncertainty –  I know it is not going to be easy, but given the choice of losing one of my children or doing it all again…I would choose to do it all again in a heartbeat.  I wouldn’t have it any other way.

We don’t get to choose the path we are given to travel – we just need to make the most of what we are given.
Never Give Up !!!

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