I recognise this isn’t a checklist that you are ever going to want to refer to… But sadly it is a place that I’ve become accustomed to frequently attending over the past 17 years with my daughter, Elke B and briefly with my mum in 2018. To date, we have always had a positive outcome for my daughter and we intend to keep it that way. Devastatingly my Mum was too frail and exhausted to recover and was fully aware that there was nothing else they could do for her.

My hope is that your precious patient is one of the many who recover and get to move out of intensive care to the high-dependency unit and plans to recover outside of the hospital environment.

I thought I would share a bit about what keeps me positive (ish), sane and focused on getting my precious patient out of Intensive care in the hope that at least one tip will also help you as you tip-top through this precarious environment.

To be honest, your survival through this traumatic ordeal is probably about YOU being prepared and planning YOUR day at a time when you are totally unprepared and unable to plan because it feels like everything is out of control.

Believe me, I know this scenario so very well and as I’m a person that’s always busy doing something I found it particularly stress-fueled as I was worrying about all the things I couldn’t do and all the things I didn’t yet know and understand… What I now refer to as “procrastination on steroids”.

My thought process was this:

There are lots of things that I feel I ought to know but don’t, there are lots of things I ought to be doing but can’t and there are probably loads of questions I ought to be asking but I don’t yet know what they are…

Just a quick note to say if you do decide to follow all of these tips you may need a rucksack. I honestly do look like I’m coming to stay for a week when I visit Intensive care units; perhaps I don’t need or use everything I take every day and could downsize but so far I’ve found it takes time to decide what to take and what not to so I take it all rather than spend time making that decision.

SO WHAT CAN I DO?

I realised that the only thing I almost had control of was ME, my own thoughts and actions. None of that felt like it was under my control, but I surmised that there had to be some things that I could take back
ownership of… So that is how this list started:

1. The most important person to look after is YOU! I know the situation you find yourself in is a million miles away from what you had expected to be doing this week, and no doubt you are frightened, and exhausted with worry about what comes next, BUT at this precise moment, the best people available are looking after your precious person to the very best of their ability and there is very little that you can do to assist them.

So you need to concentrate on what keeps YOU well despite what is going on around you, Remember this is just the beginning of an unknown time span of recovery in which you WILL play an important role, so you need to be keeping an eye on how you look after you during this time too… this usually comes down to food, drink, sleep, fresh air and exercise.

I know, I know, I know… I also look at all 5 of those and I KNOW that they are probably the 5 things that you REALLY don’t even want to think about at the moment… But they are crucial to embrace a little if you want to get through this!

Exercise: I’m not dictating that you suddenly go to the gym every day, (although many a time I had wished I knew how to hit a punchbag without hurting myself). What I am suggesting is that you park at the far end of the hospital car park or walk from the station to the hospital and once inside take the stairs rather than the lift. Even that little amount of exercise will also give you much-needed headspace so you can face what is going on once you get to the Intensive care unit. Sitting next to an intensive care bed is stress-filled, noisy, and not doing you any good. Our bodies aren’t built for sitting down for long periods and after Elke had an extended spell of hospitalisation in 2015, I found my legs were swollen and painful which, in fact, I had “armchair legs” and needed to wear compression stockings for a couple of years to help me manage them ( #rockingthestockings). So please do stand up and walk around the bed a couple of times an hour and make sure you take regular breaks from the intensity of your bedside vigil.

Fresh air: Intensive care units rarely have windows or fresh air and are generally kept warm to help your loved one recover swiftly… So you need to get outside for some fresh air too! If you are spending most of your day going to and from the hospital I would suggest allowing an extra hour prior to visiting times to visit a local park and just walk around (try not to sit again), listen to the birds, watch the children playing, or the dog walkers, marvel at the joggers and enjoy the flowers. Just a brief warning that pretty much at least one of those will stir up emotions that you thought you had under control… Its alright to find a bench and just sit there and cry if you have to… you have got to face the emotions you are feeling at some point and we all know how healing a good cry can be.

Food: You can pretty much guarantee that the doctor you’ve been waiting hours to see, the physio you had some questions for invariably turn up just as you go off to find a bite to eat or a cuppa so it is good to have a stash of healthy snacks to keep you going until they visit!

Hospitals DO increasingly have healthy food choices for you to eat and there will be a cafeteria where you can ensure you get your 3 meals a day if you are staying nearby. The dreaded snack machines are an easy option which you WILL regret if you use them too often during your vigil especially if you are usually a healthy eater. Ask the staff in the canteen if they have healthy options or where the nearest place is to get them!.. The chances are that there may be a local market that sells fresh fruit, or a healthy café… Visiting either on the way to visiting time will also boost your steps for the day and ensure you have something to eat when you get a chance. I invariably have a healthy nut bar, a bag of nuts or coconut chips in my bag along with an increasingly battered banana… if I don’t fancy eating any of these I’m probably not hungry so should have a glass of water instead!

Water: Make sure you always have a bottle of water with you. Being inside a hospital you will find the heat and air conditioning plays havoc with your hair and skin as you become dehydrated so it really is vital that you drink those magical 2 litres of water a day. There may be a visitors or parents room with tea and coffee facilities for you to use which will help but be wary of a sudden increase in your caffeine intake as it is not ideal especially if you are already having trouble sleeping. So as with all of these tips being prepared is key. I do try to take decaffeinated tea bags with me or my favourite herbal tea.

Sleep: I’m sure your mind is full of confusion and worries that are preventing you from sleeping, but this situation is increasingly exhausting so you do need to find your own way of helping yourself get to sleep. Sleep helps our body recover (which is why our loved ones have been placed in an induced coma) and allows our brains to process the information we have been given during the day. Whilst all of us at some point will find ourselves nodding off in the intensive care unit as we sit there without stimulation and with the rhythmic sound of the equipment & monitors easing us into a slumber, this is not enough for our bodies and minds to recover from the day. It is important if possible to go to bed at your normal time even if at first you can’t sleep. From my own experience Sleeping in my armchair usually gives me a headache and I dislike waking myself up further by cleaning my teeth!

You do need to stick to your usual routine but maybe add a chamomile tea to help you relax, or use a couple of drops of lavender essential oil on your pillow or wrists. If I can’t sleep I will listen to a meditation to help me relax. Generally, the reason we can’t sleep is because we are worrying about things going on at the hospital so I also tend to have a notebook and pen by my bed in case I suddenly think of a burning question I need answering or a reminder of someone I meant to call or something I wanted to take with me.

2. A Notebook & pen: These are of paramount importance… Firstly I use them for writing down the doctors and nurses names that are looking after my daughter. I’m usually really good at recognising faces and putting the names to them… But this is a stress-filled time and I keep forgetting who is who and what they are doing especially initially there seem to be so many people looking after her needs that it’s good to write them down… Plus it gives me something to do.

I also write down what treatments are being used and any proposed therapies that could be included. Any drugs I’ve never heard of before. Particularly during the doctor’s rounds, there is so much information being discussed and words I’ve not heard before that I like to write everything down so I can digest it better later on, I tend to ask the doctors what criteria they are working on improving and how long that would usually take so I have a yardstick to measure progress against… it’s not ideal as every patient will react to treatment in a slightly different way but it is a start in feeling involved in their recovery.

I also keep a log of anyone who has visited or sent a special message or cards for Elke… there are so many thoughtful people wishing you well but you can’t always remember them all and remember to thank them for their support at a later date.

3. Support: Everyone is always so generous with their offers of help that it’s not always easy to think of what help you need so here are a few suggestions FOOD… If anyone can cook an extra evening meal for you so that that’s one less thing to do when you finally get home it really is a godsend. There may also be someone who would be good enough to make you some lunch or grab you some healthy alternatives to take to the hospital.

Perhaps someone else could visit one day to give you a chance to catch up on all those boring chores that build up at home and it will give you a break from the relentlessness of travelling and your bedside vigil… I know you probably don’t want to do this but if they are stable and someone else can visit it will give you a chance for some all-important self-care. It’s good to note here that you should not worry about missing a day… If there was a sudden deterioration in their condition the team WILL find you to get you back to the Unit.

Would it help if someone did your food shop for you? Or put the washing on? Walked the dog? Offered to look after the children for a sleepover? Most importantly you need a friend that can listen to you telling them how YOUR day has gone. Ideally, an impartial friend who is not going to try to fix it, but will just listen to you while you have a well-earned rant. Sometimes when we hear ourselves saying things out loud the bad things don’t seem quite so bad and sometimes it helps us to hear what we are saying so we can work out what we want to do next, or what questions we want to ask.

4. Communication: Updating everybody can be as exhausting as being at the hospital all day… We have a family WhatsApp group to keep the immediate family (grandparents aunts uncles cousins, my husband and son) updated on Elke’s condition which I tend to update shortly after the doctors round with news about her current condition and proposed actions for the day. I then update the group again when I leave her at the end of visiting just to tell everyone about the positive things I’ve been trying to do with her, and any reactions to treatment (I try to keep this positive for all of us) My wider group of colleagues and friends I tend to update via a Facebook group so they can pop in for an update when they want to and there have been occasions when I’ve put everything as public on Facebook and Instagram. This means you have more time to speak to those people that you want or need to and that your time away from the hospital doesn’t feel like you are still there!

5. Things you CAN do to help your loved one: The majority of the people in an intensive care unit are necessarily comatose to allow their body to recover… but just because the unit appears to be pretty quiet it doesn’t have to be!

Being in an induced coma you can still hear a lot of what is going on around you, so try to have positive conversations around your loved one’s bed. I talk constantly… so why shouldn’t I be the same while visiting an intensive care unit? When my mum was in intensive care the whole family were sitting around chatting as if my mum was part of the conversation.

When alone with Elke in Paediatric intensive care I would read her all the comments on my Facebook posts about her. I would give her every kiss promised and every hug too. I’ve always got a book in my bag so I’d read that out loud too. I’d tell Elke about what I’d had for lunch and who with, who was coming to visit, what the dog had hidden which film I had fallen asleep to and how I thought it might end. My husband would let Elke know the cricket scores, what the traffic was like on the motorway and how many miles per gallon he was getting out of the car! She may not have been interested in all or any of this but it gave us something to do and it meant she could hear we were there all the time.

I have one regret from when my mum was in intensive care in her last hours I read my mum a book that I thought she might appreciate; yet when my sister and I were sorting through her things later in the week I found a book she appeared to have been reading and wished I had read that to her so she knew how it turned out.

If your loved one loves music ask if you can bring in some music to their bedside bay… Chances are they have their own playlist on their phone and you could ask if that could be played quietly in their bay for you both to share, or they could listen through their headphones for a while! My mum used to be particular about her hair, and my daughter loved having her hair beautified so it was something I asked the staff if I could do with their help whilst both they had their stays in intensive care. Subsequently, there are some very uncomplimentary photos of myself with Elke in a dry shampoo hair cap on Instagram somewhere, but also several photos of the night staff’s beautiful hair creations for her whilst in Southampton PICU.

I find bringing in Elke’s favourite toiletries from home to waft past noses or put on pillows helpful for those moments when they may be off the ventilator or as they recover. Elke loves her body creams and they are particularly important to maintain her skin integrity so it is worth asking if the creams they usually use at home can be used on a patient on oxygen; some cannot because of their oil content.

We all know how great it is to have clean pyjamas to snuggle into so favourite pyjama tops often get brought into the hospital… And failing that trawling through the online shops to find the perfect new pyjamas often kills some hospital time and gives you something else to talk about! Intensive care occupants are invariably catheterised so it’s often only the pyjama tops that get used, so I often end up buying extra tops, usually shirts with buttons down the front which are easier for everyone to get on and off whilst the patient has tubes attached to all sorts of places.

This list is not exhaustive… My hospital rucksack is like a pantomime dame wardrobe… you never quite know what you are going to see emerge from it next. I do have a set of colouring pencils and a colouring book in there for those days when things aren’t quite going to plan and I’ve been asked to wait outside.
I never enjoyed colouring in as a kid but I learned to embrace a sort of aggressive colouring in as an almost productive outlet whilst waiting in the parent’s room in Southampton; in fact many of the parent collective staying at Ronald Macdonald House at that time invested in some pencils and a book to colour in during the lunch breaks the ward sensibly imposed on us all. Sometimes colouring club continued into the afternoon as we sat by our children’s bedsides waiting for them to recover. One of us even remembered to purchase a pencil sharpener for us all to use!

I hope these tips have proved useful and distracted you for a while; do let me know if you found any of them useful and please do let me know of any other tips you feel would have been useful to know.

Wishing you and your loved one a speedy return towards home!

Glynnis x