Caring Amidst Coronavirus

Caring Amidst Coronavirus

Metamorphosis

I turn up for work in my clothes, shoes and with my bags from home; from the outside world. I step in through the door and the transformation begins.

I change out of my clothes into full PPE (scrubs, apron, plastic apron, gloves, mask and visor), my shoes are changed for my choice of indoor footwear and any contents of my bag that I will need for the day are placed into a tray that I have just disinfected. My outside self is hung up on a coat hanger or placed into a storage box. If I am carrying coronavirus, it stays at the door!

The transformation was exceptionally difficult when we, as a care team, started back in March as we metamorphosed from human into what felt like alien in a residential setting. James is a very sensory young man and suddenly he was stripped of our touch, our hugs, our smile, our frown when we are telling him off – he probably doesn’t miss that – and so we had to learn to communicate with just our eyes and he had to learn how to interpret us. PPE hasn’t been all bad through, especially the plastic aprons! Woe betide us if we ever put one on without James seeing us – one of his new favourite things is to have us waft it in his face, sometimes for up to 5 minutes as we try and put it over our heads: as we disappear in and out of his vision like an overly exaggerated game of peek-a-boo, the rustling of the plastic ripples through the air around him like a mini electrical storm causing a smile to spread across his face as naturally as hair stands on end when touched with electricity. Even the constant cleaning can be turned into entertainment! Every door handle, window handle, work surface, bath tray, wheelchair that we touch, needs to be disinfected by us on every shift in order to keep James safe, but so long as we unravel the blue roll over James’ head every time we need some so that it tickles his nose like a cascade of falling feathers, or bob up and down like a jack-in-the-box when we clean something low level out of his sight line, we are guaranteed a smile – more often than not he even smiles in anticipation of us turning this necessary routine of cleaning into playtime!

A complete change

But despite the frivolity, it has been a complete change for us all. While we are all too acutely aware of the risk of ill health James is at every day of his life, PPE and caring amidst coronavirus has raised this awareness to a frighteningly new level that sits within our stomach and our consciousness as heavy as an anchor weighing down a ship. Have we changed our gloves at the right time; have we worn enough clean aprons; have we changed our mask on time (is it still effective)? James is a snig for popping out his tracheostomy - just for fun - and at the moment he finds it all the more hilarious as he sees us frantically rushing to squeeze into gloves that are too small (stock shortages means we can’t always get hold of ones that are the right size) so we can change it! He looks at us with a wry smile just before he whips his hands around his feeding tubes and pulls them out, sometimes with such force, the gastro-jejunal button starts to come away from his stomach (if this comes out it means a trip to hospital, which is somewhere we cannot afford to go at the moment)! Again, he is testing us and shows us all his teeth in a beaming smile as we then wrestle his arms still over his stomach, to keep his button in with our elbow as we once again make sure we have the correct clean gloves on in order to touch not only his tubes, but also his skin!

Our brains work frantically every day, not only now with the usual troubleshooting questions for James: “is his breathing properly?” “what intervention does he need?” “is that sepsis?” “is he having enough fluid?” “what does that smell mean?” but in every split-second decision now, we need to make sure we factor in PPE. We need to factor it in as naturally as the act of drawing breath. It could save his life.

Hospital is somewhere we do not enter into lightly. I have seen first-hand how close to death he has been (contracting MRSA in hospital, suffering an aneurism, sepsis and influenza) and how on these occasions how vital a ventilator has been in the fight to keep him with us.
I am sure I need not explain to you the link between coronavirus and ventilators; the demand for them; the demand for the wet circuits that fuel them; the shortage for the people who really need them. It became clear to us during the first lockdown, back in March, when we were receiving the multitude of phone calls asking for the return of James’ medical supplies (including his oxygen), that if he ends up in hospital, there is doubt as to whether he would be saved. For us, we have been left with the feeling that if the choice for a ventilator is between a ‘healthy’ teenager, or James, the ‘healthy’ teenager would be saved.

PPE is vital. It is imperative that we as a care team make it work. If we get something wrong, caring amidst coronavirus, James could die. We as carers could lose a young man, who in his own way is more important to us than words could ever convey. James and Christine have sacrificed so much since March; shielding for what is now 8 months; being apart from the rest of their family for most of it; we as a care team must do our part to make sure we come out of the other side of this pandemic as a complete unit. We will not lose anyone to this virus; we will continue to challenge the statement made by our Prime Minister in March saying “families will lose more loved ones.” Not in this house. Not in this team.

The scrubs are washed by Christine once we have worn them as we take them off and place them in a designated wash bin by the door. We transform from PPE alien to human as our outdoor clothes and shoes are put back on. Our bag is refilled and the tray we used to store the contents, disinfected. As we open the door, we disinfect the handle before closing it behind us and breathe in the air; as fresh to us and as renewing in that moment as the first ray of sunlight to touch a flower after a night in the shadows, hoping we have done enough…..

The outside world

But what about the outside world? Outside, away from the alien protection of our PPE, we are the same as everyone else bound by lockdown rules and each one of us has reason to protect ourselves: I, for example, have a heart condition and other members of the care team have their own health reasons for needing to stay safe.

When the lockdown tiers were more relaxed, a friend would ask “do you want to come out for a walk?” or “shall we go for a drink in the pub?” The answer to these questions was invariably, “no, thank you.” The greater the number of people outside, the more frightening the outside world became. Each one of us began to live with the fear of becoming agoraphobic to keep ourselves safe, we kept away. Christine wasn’t joking when she said that James’ care team had gone into lockdown with them.
With James always in our thoughts, we began, and still live by the routine of showering both before and after each shift; never travelling anywhere before work – not even popping to the petrol station for fuel. Everything has to be planned in advance – my house has so many lists on post-it notes I am sure I could open it up as an advert for a stationer! The incredible care team I am a part of, and our own individual bubbles are our lives – we eat, live and breathe for each other (it is a good job we all enjoy one another’s company)!

As we all now begin another phase of national lockdown, the caring amidst coronavirus continues and we grow ever more stringent, uncertain as to whether this routine we are in will ever end. And so, I turn up for work in my clothes, shoes and with my bags from home; from the outside world. I step in through the door and the transformation begins, hoping I have done enough…..