Mum’s Story - Part 2

Yesterday I went to the hairdressers, I couldn’t afford it, but the grey roots nearing 2 inches, which had obviously accelerated in the past 12 months, needed serious attention.  My wild curly hair, my trademark as it goes, really needed a bit of a trim.  So the credit card got hit again!  Whilst there, I was speaking to Sarah, the owner, who I have known since our school days.  She began to tell me a story that she assumed I already knew.  She remembered that at the bonfire night firework display at Loddiswell last year (2011), a rumour had sparked its own fire around the spectators.  Her son Jack, a school friend of Howard’s, had staggered down the stairs at home, holding his stomach and grey faced after receiving a phone call, telling his mum that he thought he was going to be sick.  When asked by Sarah what was wrong, he announced that he had, had a phone call from Harry, another mutual friend of Howard, who had been party to the rumour at the bonfire gathering, and Harry had told him that Howard had died!! When Sarah uttered those words, a chill went through me from the tip of my toes to the very last grey hair on my head.

Goosebumps covered my arms and my chin began to quiver.  Her eyes welled up, I tried to put on a fake smile to disguise the feeling that was overwhelming me, but I was filled with a flashback of the feelings of fear and anxiety that I had, during the first few days after Howard’s brain stem stroke (31 October 2011). She was shocked and a little uncomfortable that I was unaware that this was what people had been saying through our home community.  I tried to not make her feel that way by holding back my own welling eyes and purposefully trying to get my body to not show outwardly the horror it felt at this thought.  I was grateful for her honesty and for the impact such a thought had, had on Howard’s friends.  I then drew myself up with pride that my son means so much to so many people.  The feeling of love I felt at hearing this, the warmth and affection from both people who do know us and also those who do not, left me, not only with less grey hair, but with a sense of security and wellbeing, a feeling of belonging.

Now here we are again, I put pen to paper.  I have always wanted to do this, to tell it from the heart, try to explain how this whole new life has felt, and is feeling.  It has been hard to find enough time and energy to write what I think should be said and shared with all those people who have devoted their time and resources, and offered their continuing support. Last week, after what can only be described as a traumatic and emotional nigh on 12 months, we finally got the ok for Howard to be discharged from the RNHRD in Bath, where he had been a patient since 6th December 2011.  Jezz and I wrote a diary the whole time there so that if we should ever need to refer back to anything we would at least have an outline detail.  

There were many ups and downs, to which I have referred to in a minimalist fashion in “A Mothers Story” – Locked in Syndrome.  It is hard to write it all in detail, the emotion of it all at times was, and is still, unbearable.  There were many good, and kind Doctors, Physiotherapists, O.T’s, Speech and Language therapists, nursing staff and health care assistants, some of which I believe will be lifelong friends and who will be named at the end of this part of our story, but there were equally some very bad ones who just added to the trauma of the whole experience.  I was dealing with a deep felt grief and was feeling as if my Howard, had, actually died, and that I was constantly grieving the loss of my beautiful, bright, active and sporty son, with his whole life ahead of him, aspirations of university, driving a sports car, earning loads of money, marrying a beautiful girl and having beautiful children, and at the same time trying to stay strong and consistent to my new son, who of course I loved equally, but my heart would break over and over as I watched him struggle and feel trapped and powerless in his new body.  Such a confused set of emotions took its toll, and were it not for Jezz my darling husband and amazing father to Howard, steadfast beside us, I am not sure I would have survived this journey so far.

Our days have been full of noting Howard’s temperature, which constantly fluctuated, sometimes terrifyingly so.  His saturation levels also sometimes resting comfortably and other times dropping dramatically and causing great alarm, oxygen assistance and so on, his susceptibility to chest infections is his real Achilles’ heel.  A downward fall could be extremely rapid, one time he got a bad chest infection he ended up with pneumonia and his lung collapsed.  He had to be taken to the RUH hospital in Bath for treatment at this time which was not a good experience.  He returned from that trip with more complications having picked up C-Diff and having to go into isolation.  We sat and worried about every cough, every twitch.  There were some terrible times where staff would not communicate with Howard in the ways they had been trained to do so and in the ways that Howard needed them to.  He would tell us how crap individuals were, he did not know why some of them were nurses as they did not care about people only their salaries.  They would not take the time to make relationships with him as he needed them to.  They would not take the time to understand how he must feel within this locked in state.  They would make assumptions because they could not be bothered to take the time to actually find out what was troubling Howard or how he needed them to help.  This even at one time, lead to a nurse giving him a PRN of Diazepam!  A health assistance who was meant to be specialling Howard was taking no notice of him, he was desperately trying to get her attention.  When she finally looked at him she did not bother to use his mega bee board to allow him to spell out what he wanted, she just began to stroke his face which annoyed him even more.  When Howard gets angry and upset he makes his body go rigid and pushes his head backwards in frustration.  The nurse could not calm him down but also did not take the time to find out what was wrong and so decided to drug him into a relaxed state, then using the excuse that she thought he was have an Epileptic Seizure.  She did not explain that she thought he was having a seizure but just administered the drug.  The point was that they obviously over the past 8 months, not taken any notice of Howard and how he expresses things, even though there were photographs on the walls showing various expressions and everyone was supposed to read up Howard’s notes.  They had both known him since he was in the HDU ward.  I was furious.  This was one of several written complaints that I had to make.  Howard did not have a seizure, what Howard had was lack of communication and care.  All of the nurses and healthcare assistants who really cared about Howard would have all known he was just showing anger because he was initially being ignored.  It should never have got to the pitch that it did.  That same healthcare assistant decided that, although Howard was peg fed through a tube in his stomach, unable to swallow, and obviously NIL BY MOUTH!, she would give him a drink of water, pouring from a cup directly into his mouth!!! Oh my days, as Howard would say.  She probably poured the water straight into his lungs.  There was even an incident whereby Howard actually fell out of his bed in HDU and onto the floor!

The last traumatic thing before we left was a 2 minute warning to say that they were moving him from his bedspace on the ward where he had been since February/March time, and Jezz had decorated for him with posters, fairy lights, photographs etc and made it like his own bedroom, to a side room not big enough to swing a cat in! They said the ward was being changed to a female ward and they had only just found out!! How unlikely is that?  We all know these things take time to organise with new patients coming in and that they must have known about this well before they announced it to Howard.  The very least that could have been done would have been a weeks notice for him to at least get used to the idea.  He was mortified to say the least.  His posters were pulled down and torn as they had been stuck up so well, his possessions were thrown into boxes which were stacked high in the small side room.  Howard’s mood went down big time.  He would not get out of bed, bearing in mind he is supposed to be moved from side to side, from his back to his chair etc. to keep his chest free from infection, he was having none of it.

He would not wash nor allow people to come and see him.  He would not spell things out on his megabee or use his igaze computer to speak.  He was angry that he had no control over anything, not only could he not control his body, but he could not control his environment.  Howard again hit the point where he did not want to live anymore, even asking Jezz to kill him.  Can you imagine your child saying that to you?  We were again overwhelmed with grief and fear and just not knowing what to do to make this already horrible life more bearable for him. Many more tears were shed, Jezz and I also felt broken.  Heartbreak seems almost too prettier word to describe how we felt let alone how Howard was feeling. He wanted a sign written outside his door to say he was not sociable and for people to go away.  He wanted the curtains drawn and the lights out.  We sat there with him in a boiling hot room in darkness and knowing that with him not moving is was really detrimental to his vulnerable chest.  He began sounding really gurgly and we felt so worried.  Then, they began to forget he was there.  One day they forgot a feed for three hours, they stopped doing the necessary clamping of his catheter, which is to help the bladder strengthen and to encourage Howard to know when he needs a pee, it was four days and only me asking why they were not doing it that raised the alarm and started the process off again.  No satisfactory explanation was given as to why this had not been done.

Alongside all of these constant goings on, Jezz and I were on the whole physically separated though not spiritually. Jezz had given up work to be with Howard, thank goodness, for without him there goodness only knows what other disasters may have happened.  I kept on with my full time job, travelling daily up and down to Plymouth from Chillington, studying for a Management Diploma, travelling up to Bath by train on a Friday straight from work, whizzing off to Totnes railway station, jumping out of my car and onto the train and back down on a Sunday night. Jezz and I had constant communication with each other and drew strength from each other.  It was quite some time before we felt confident enough to leave Howard in the care of the hospital alone so that we could just have a break back home together.  Jezz had not even really known our bungalow at Chillington as a home, as I had done the move from our previous cottage to the bungalow without him.  I had confirmed that we would take the place without him even having seen anything more than a few photographs.  It was scary making those decisions on my own, it was all happening so quickly.  I made it happen quickly because I desperately wanted my boys home.

Those Special People RNHRD – Those who really cared, took time, made the effort to get to know Howard and treat him like the person that he is, with respect, dignity, absolute kindness and friendship


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