Comfortably Numb

Comfortably Numb

Sunday 28th February, 2016

I don't remember a lot about that evening. It was a Monday, which meant no clubs for the children - it's our one free night where there is no Beavers, football, swimming, taekwondo, ballet... I must have collected the children from after school club and explained to them that Daddy was in hospital where the doctors could keep a close eye on him. I think I tried hard to reassure them that it was all going to be ok. But to them 'hospital' meant nothing. They accepted what I said completely and without question: Daddy was being looked after and would be home with us again soon.

Children have no option but to accept what they are told. Their main source of knowledge is their parents and if they are told by them that chocolate tastes disgusting and have no one contradict this fact, they will believe it. I'm a great believer in telling children the truth and explaining things properly to them, not babying them or sugar-coating the facts. I probably spent a long time that evening explaining that Marc was weak from not eating for days. Telling them about the drip the doctors had put him on, which was restoring him to health. I'm not sure how much they took in, but I do know that neither of them got upset, as I thought they might. I said Daddy was away for a couple of days and would be back good as new very soon. They simply accepted it.

I wasn't so sure.

I got up the next day and took the children to Link Club before school. This was usually Marc's job, but that day I took them for the first time ever. I called work and told them I was coming in, but might be a bit late, due to having to drop off the children. I also asked if I could leave early (I had a free period towards the end of the day anyway) and go to visit Marc in the hospital. Colleagues asked why I was coming in at all, but to me, staying off would have been like admitting that something was seriously wrong, and I didn't want to do that. Also, being in work would take my mind off Marc for the time being, and I welcomed that.

Shocked

I taught all day, although I'm not sure how well, and spoke to a couple of friends at work about Marc. Most of them were shocked that he was in hospital. I remember playing it down, again refusing to give my fears credit. Instead, I constantly repeated the mantra: he was only there to have fluids. He would be home again soon, right as rain, in a couple of days. How wrong I was.

I left work around lunchtime and drove straight to the hospital. Visiting time was something like 3-4pm, and I managed to get there in time to spend the whole hour with him. And what an hour it was. I had hoped that I would find him sitting up in bed, with more colour, telling me that the fluids had done their job and he was on the road to recovery now.

Severe pain

Instead I faced a man who still had constant sickness, though he hadn't eaten anything to actually throw up any more. A man with a bedside commode which he was using because he didn't have the strength to get to and from the toilet further down the ward, and because the staff didn't want him infecting anyone else with his mystery illness. A man who was on morphine.

Morphine. Now I'm not a medical person, and my first thought when Marc told me that he was on morphine was that it was used as a painkiller when people were dying and there was nothing that could be done other than to reduce pain levels and make them comfortable. This was terrifying. I didn't really understand at the time that morphine was used as a painkiller after operations or when someone's pain required a stronger drug. The one thing I was sure of was that morphine was powerful, which had to mean that Marc's pain was severe.

Hallucinating

It also made him have a form of hallucination where he believed things that were blatantly not true. That couldn't be true. But he was utterly convinced that they were. He spoke to me half way through the visit about the child of a friend of ours, a boy just a few months younger than our own son. He was convinced, he told me, that he had been in a terrible road accident and was seriously injured or dying. I have no idea where he got this from, and to this day don't really understand it, but he was so convinced that it was true.

He insisted quite forcibly that I get on the internet and Google the child's name, and only when I had shown him that there were no reported accidents on the news websites of this terrible crash, would he let it rest. This was extremely odd behaviour, and coupled with the fact that he was occasionally still being sick and could not tell me what the doctors had said to him, made my concern increase. He couldn't tell me anything, other than the fact that the doctors had decided to keep administering fluids and to give him morphine for the pain. He didn't seem to have any idea how long they thought he would be in, or what was wrong.

Making themselves scarce

The frustrating thing about visiting time is that the doctors are not present on the wards, having done their rounds prior to visiting, and the nurses also make themselves scarce. They do this to allow families spend time with their loved ones without interruption, and probably to have a quiet hour where they can catch up on paperwork and perhaps have a cup of tea and a little peace. General wards are hugely understaffed - usually one nurse is in charge of two bays of patients with six patients in each. Twelve people. That's a lot for one person to take care of. So any 'down' time they might get is hugely appreciated. And actually I don't believe for a minute that they sit with their feet up drinking a cuppa during visiting hours.

Why am I telling you this? Well because that day I needed to speak to someone. A nurse. A doctor. Anyone who might fill me in on what was actually wrong with my husband. But there was no one to be found. I was determined not to leave without speaking to someone, as my worry was quickly turning to fear. Eventually I found one of the Health Care Assistants, who pointed me in the direction of the ward sister.

I found her attending to a patient at the other end of the ward and had to wait about another fifteen minutes until she was finished and could talk to me. I explained who I was and asked what the diagnosis was for Marc. She took me to one side and basically said that he had been in a lot of pain, hence the morphine, and that he had a constant temperature, but that despite sending off bloods for investigation, the doctors still had no idea what was the matter with him.

Fear began to turn to terror as I realised that the medical staff at the hospital (the ones I had had faith would know what to do to help Marc) were actually completely stumped as to the cause of his illness. The look on the sister's face was not comforting. She clearly didn't want to alarm me, but her expression showed me how concerned she was that she had a very sick man on her ward with no real explanation why. She almost looked as though she pitied me. I asked what would happen next, and she didn't really have an answer.

Listless

I felt guilty taking up so much of her time and also worried that I was still on the ward long after visiting time was finished. Not knowing what else to do, I told the sister that I would return for evening visiting at 6 and bring the children with me. She managed a weak smile as I left but it didn't give me much comfort. As I passed the door to Marc's little room I could see him, pale and sweaty, lying listlessly on the bed. I think I tried to wave at him but can't remember if I got a response.

For the second time in two days I walked away feeling as though I was abandoning him. The situation was beginning to feel nightmarish: I just couldn't see where this was all going and felt extremely helpless. Thoughts crowded my head as I left, all jostling for pole position.

You can't treat an illness you don't understand. If the doctors didn't know what it was, how were they going to manage to treat him for it?

Comments

Pauline Moore

Thursday, 3 March 2016 at 17:25

What a harrowing time you had of it! I could just see you there on the ward and explaining to kids something you didn't really understand- so stressful!

clare

Friday, 4 March 2016 at 09:24

Yes - it was very difficult, although thankfully I don't think much of this got through to the children. I don't think they really comprehended how ill Marc was until much later (I'm not sure they fully understand it now). They are remarkably well adjusted, considering.

Marj

Friday, 4 March 2016 at 08:12

Feel quite emotional reading this Clare even though I was a little aware at the time of how poorly Marc was I thought like you he would be treated and home in a couple of days . That's what I hoped and prayed for at the time but going back to wearing my nurse's hat I did have niggles and concerns that things were much more serious when I heard that there was little improvement. Your amazing remembering what went on in this nightmare situation.

clare

Friday, 4 March 2016 at 09:28

Thanks Marj. I really want to write it all down before it gets lost in the mists of time. I so appreciate what all the nurses and doctors did for Marc but that terrifying realisation that actually doctors are just human and don't always know what to do was horrible. I was so naive, looking back, just assuming there would be a cause and a quick cure. I remember that sister (not her name, unfortunately) but how she clearly wasn't sure what to tell me and how concerned she was, despite appearing calm on the surface. Thanks for reading.

Marj

Friday, 4 March 2016 at 13:24

I can feel for the sister . Most people going into hospital do think and believe someone will have all the answers it's what most of us expect , but life isn't always that simple and unfortunately for you and Marc it was a far more complex and terrifying situation. Good for you writing out your thought and memories of this awful time for you all.

clare

Sunday, 6 March 2016 at 17:12

Thanks Marj.

Rachael Benfield

Friday, 4 March 2016 at 09:33

So touching an emotional it brought tears to my eyes, such a courageous way to share your story! xx

clare

Sunday, 6 March 2016 at 17:13

Thanks for taking the time to read and comment Rachael. I'm so glad it is affecting people in this way.

Harriet

Friday, 4 March 2016 at 17:11

You are such a good mum, Clare. That the children weren't worried or upset in the beginning is a testament to their faith and trust in you and Marc as parents. I am enjoying reading your story and really wish that I could have known more and done something to help when you were in the middle of it all. Thanks again for sharing. xx

clare

Sunday, 6 March 2016 at 17:16

Harriet you did more than enough by offering to have the children occasionally and helping out with lifts to and from various places. A number of people who did those kinds of little things made all the difference to keeping the children's lives as normal as possible and allowed me to ' keep going' for them if nothing else. And you didn't even know us particularly well at the time, so it meant more than you know. Thank you.

Cathryn

Saturday, 5 March 2016 at 14:48

Reading this with a lump in my throat. Didn't realise , until now, how much you had all been through. When you hear things second hand you don't always understand the severity of the situation. So glad that things are looking up for you all now. xx

clare

Sunday, 6 March 2016 at 17:28

Thank you Cathryn. I appreciate you reading this and sharing your thoughts. I want to tell the story in more detail, because I really don't think it's easy for anyone not immediately close to a situation like this to fully understand it or know how to react. So many people were indirectly involved (yourself included, in terms of the play), as our lives intertwine with more people than we realise, yet it wasn't always possible to share what was going on with the world at large. Half the time I didn't know what was going on. Thanks again for taking the time to comment. It is much appreciated.

Sheila Maloney

Thursday, 10 March 2016 at 12:59

I can feel your total helplessness Claire, such a desperate situation to be in. Worrying enough when we know the fight we are fighting but when the people we look to for expertise and reassurance can't help us it's devastating. All I can say so far is you didn't realise how incredibly strong you were/are.