Are you okay? A sort of Homecoming

Post by Stuart Menzies

I write this as a husband of a cardiac arrest survivor and a lifesaver. I make no apologies for trying to focus on myself and how my wife’s SCA had an effect on me. There have been many stories shared from survivors but very few from husbands, wife’s, relatives or friends of SCA survivors who were actually present during the event and carried out lifesaving actions. I hope that by writing this I can assist those people with their recovery. This is episode 2, part 1. If you have not done so, it may be better to read episode 1 part 1 and episode 2 part 2 to provide a background.

Thank you, these don’t get any easier to write, nearly 3 years on.

Home we came

24th February 2016 – I had been off work for nearly 3 weeks, but attending now and then, when I could, to update my line management, try and keep on top of what was happening there and to escape. This was my choice, a definite escape from what was going on around me and an effort to find normality, little did I know that normality no longer existed in or world.

The support network around my work continued and was so helpful. Not having that extra burden to worry about. I cannot emphasise the importance of having support from your employers. They understood, and that was one less thing to worry about. There was no pressure on me to return to work, in particular in to what could be a very stressful role.

I did find it initially surprising as to how upset I was becoming when telling people our story. I was constantly meeting people and when they asked, having to tell them our story, what had happened, what the outcome had been, the fact that only 8% of people in the UK survive an out of hospital sudden cardiac arrest. Whilst it was draining, I did find some degree of respite from this and continue to do so to this day, maybe this is one of the reasons I am doing this.

On hindsight I was, and still am to a degree suffering PTSD. I knew that at the time and took steps to rectify the situation, as I will explain, but I did not fully recognise the extent of my suffering, I probably still don’t.

Home at last

So Susan came home

24th February 2016. I liken it to what I remember when we got our children home for the first time. It was an amazing feeling but felt so different, like nothing I had felt before. I was on the alert all the time, every noise , bump, sneeze, are you ok? I would ask. This became a common theme, its only just getting better now, nearly 3 years on. I’m sure many of you reading this will recognise what I am explaining.

25th February 2016 – first full day at home. The first few nights / weeks were very hard I have to say, surreal. I struggled to sleep as I was constantly checking that Susan was still alive. Was she still breathing? Had her ICD gone off? How would I know? I was constantly checking, on alert. Silly as it may seem but that’s how paranoid I had become, and still am to an extent.

The revisit

One mission I had to complete was to revisit the scene. I knew I had to do this as part of my own recovery. I headed with trepidation to the location, Asda, knowing that I had to do this. I still struggle to go there to this day, it is like a magnet when I go in. I am drawn to the aisle where it occurred and I replay it in my head. I have tried not to do this but I find it very difficult. Susan has not been back, despite her being okay with it I have a fear that it will jog her memory… we get our shopping delivered now in any case!!!!!!!

Grocery stores are not a good place for us. I asked to speak to the manager in Asda. On meeting him I explained who I was and gave him my heartfelt thanks to his staff who had helped so much during the incident. I also pointed out that Susan had survived, against all odds. He told me that two of his staff had to go home that day as they were in shock. I felt quite bad about this I have to say, but he would be bringing them good news with my update.

My next conversation was regarding the defib that was in the store, I explained the importance of it and also explained that his staff were not assertive enough to open it and set it up. There is no point having staff trained if they are not confident about using the equipment. Even if they were being instructed by a husband/lifesaver and off duty police officer. I offered to come along to training days and tell our story and was thanked for this kind gesture. I am still waiting for them to take up my offer!!!!

Fatigued, but determined

Over the first few days we decided that we should take baby steps. Susan was suffering massively from fatigue and also had several broken ribs so was having trouble sleeping. On 26th February 2016 one of our daughters was to receive an award at High school. she was top of the School in English. Susan was determined that she would attend. And she did.

Her first time out was to be driven to the High School, to walk from the car park to the school, sit amongst a lot of people and see one of our daughters receive her award. Where she got the energy or the courage from to do this I do not know, but she did and it was amazing. Superwoman was out with Superman. It felt terrifying but equally amazing.

Driving

The next, and one of the most distressing things was the surrender of Susan’s driving licence. Many people do not understand the hurt that it can cause, giving up your driving licence. We completed the paperwork and Susan was so upset as we sealed her licence up in the envelope. Giving her independence away for 6 months. A very difficult day but something we knew that was required to be done.

The requirement to surrender your licence remains a huge issue to so many people. If you get the procedure wrong in any way (see Driving and the DVLA), your licence will be revoked and this will delay a survivors return to driving. Maybe the NHS who complete paperwork and make the recommendation not to drive should play a bigger part in this.

I knew when things were improving when Susan made an appointment the following week to have her hair done. She was feeling more confident and ready to meet the world.

Holiday

An early visit was made to our GP. We were determined to head off on our holiday to Lanzarote in April. A place we had been many times before and treated as a second home. Whilst the Dr didn’t tell us, she was quite clear, not just about the physical trauma , specifically Susan’s punctured lung, but also the mental toll this had taken on us both. We returned home and sensibly cancelled the holiday. The travel company were very kind and refunded the full cost.

Next I was to return to work. What was my first shift? Annual First Aid and self defence refresher. I am a Police Officer, we retrain annually.

First Aid included a CPR refresher. This took place on 1st March 2016 and I had to face doing CPR on a resuss Annie . The memories came flooding back. However I managed this by telling the group our story. I have never seen such concentrated CPR training after this.

To this day, I always tell our story at my annual refresher training, it spreads the word and makes the training real.

We received many visits from friends and family and I returned to work. Susan remained at home but started heading out with friends and family. She felt not too bad but suffered badly from fatigue, and very sore ribs, which continued on for a good few months. Life was returning to some form of normality. Our new normal we referred to it as. We still do, there is no such thing as normal for us anymore.

Episode 2, part 2 will be published next week

Essex Air Ambulance Clinical Governance Day

It was a real privilege this morning to talking at the Essex Air Ambulance Clinical Governance Day.  I was there to talk about my journey and SCA UK but had the added bonus of meeting up with critical care paramedic Ben Myer, who was key in saving me during my cardiac arrest.

I guess it’s a sign of how far I’ve come that when I used to talk about my event it was like walking through a word minefield, where uttering a certain word or conjuring a certain image into my head would start the emotions flowing. Today there was not a bit of that and despite standing in front of an auditorium full of people it was a real pleasure to give the story of life after cardiac arrest, and yes I did manage to plug the book!

I had some really nice feedback afterwards including this tweet from paramedic Amy

“Paul providing a unique perspective that we don’t usually get to understand. I’m always in awe of patients who have survived an OOHCA. Emphasis++ on the effect of SCA on family/carers and not just the survivor.. “

If you’re a survivor or someone else affected by a sudden cardiac arrest I’d throughly recommend you take up any offers you get to talk about your experience.  It may seem daunting at the time but it is a great way of giving back and also it can be a kind of therapy.

My Three months of Occupational Therapy, Part 2

Post by Willem Pretorius

This is the second part of Willem’s occupational therapy (OT) journal and if you missed it you can catch up on part one here.   

Occupational therapy aims to improve your ability to do everyday tasks if you’re having difficulties and this can be encountered by SCA survivors due to the effects (sequelae) of an acquired brain injury – caused by lack of oxygen (hypoxia) during their cardiac arrest.

Depending on your situation you can get OT free on the NHS either via a GP referral or through your local council.

Session 7

Today we start with the second half of my OT sessions..So far it has been very productive and I have enjoyed what I have done – but I have also seen the gaps that I never used to have..

Today I was asked to get a copy of my most recent CV and also a job description.  The aim of the day is to do a bit of planning for when I go back to work to see what I can do and when I do it. I must be honest that the thought of going to work is still very scary after my last experience – but it is also exhilarating as I am so bored with being at home most of the time

We spend some time going through my job description – I think to say that the JD has been poorly done is fair to say. Typical my boss and the company I work for… sigh

I then run Jo through my cv – but try and give her more meat around it as a IT cv takes a bit of understanding..    This all helps her and we write down the daily tasks that I have and the effort involved..  It does really hit home just how crazy my job is and how much demand on my time there used to be..      We both agree that managing me and my company is going to be interesting

Jo says to me that she wants to give me a few tasks to simulate some of the things I would do on a day to day basis..:

Task 1

Create a tracker sheet in Excel to track my teams holidays and sickness leave.  Funny how I cant get my head around a layout that works..   Need to get this brain working….

Task 2

Create a presentation for Jo around kite surfing – which is something I am keen to take up.  She wants me to sell the whole thing to her – pros and cons, costs etc..    This will be interesting for me as this is kind of some of the information I also need for myself.

It is funny how my brain struggles with some of these things now.. I’m not sure if it is because I haven’t worked for 18 months or if it is my BI…

Either way – im going to work on these things tonight

Session 8:

This was a bad week  –  I have had a notification from my company that they are considering my role to be made redundant – this on top of a few other personal things meant that my OT session turned into a opportunity to have a coffee with Jo and have a chat rather than doing the OT related tasks..

It was needed so was a good session in any way.

Session 9:

Today we cracked on with doing the proper OT work again.  As I mentioned in my previous session notes I am now facing the possibility of being made redundant so the focus of the OT session now is towards making me ready for a possible new job and the challenges that come with that vs making me ready for a phased return to work.

The exercise we did today was to test my ability to work and focus in a “office” environment with all the distractions that come with it. Not being in an office obviously made this harder  -but Jo found an inventive way of simulating this:

TV on – watching BBC news

Windows open with all of the noise that comes in from the outside

Jo sending me a random text every now and then with instructions.

Jo then putting some music on her phone to add to the distraction.

The aim of the exercise is for me to watch the TV – make notes of what is being discussed.    Also then act on her texts and do what she instructs me to do (does she not know I’m a man and that multitasking is a challenge as is?)

We do this exercise for about 30 minutes – I must admit to be pretty exhausted after it – but also rather pleased that I was able to do it and be pretty accurate.

Jo then reminds me that I have an outstanding exercise from the previous weeks to show her – my presentation on Kitesurfing. Luckily I have done this and we run through the   presentation.   She gives me some very good feedback and some comments.

Generally a happy bunny after this weeks session and hopeful towards being able to cope with a new job and the challenges that comes with it..