Surviving A Stay In Hospital

Nobody likes a stay in hospital and it is no different for a child or young person with ASD

The BIG difference is that most people are fully capable of enduring the process with no extra help apart from the occasional visit from family or friends

But what happens when the patient needs that extra help with normal daily routines like washing, eating or communication? You sometimes have no alternative but to have someone stay with them 24/7

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As I write this I’m currently spending time with my 17 year old son who has Aspergers in our local hospital so I’ve compiled my list of the 10 most important things to remember to make the stay as easy as possible.

1. Know Your Environment

You may be here for a while so it is important to know where everything is. 

Firstly  make sure you locate the patient and visitor toilets. They can sometimes be separate and the visitor ones will likely be outside the ward in a corridor. Check with the ward administrator or sister whether you can use the patient toilets/washroom. 

Some side rooms have their own facilities and this is ideal if you are lucky enough to get one like this.

Make sure there is a system for summoning help if required. Usually there is  remote control for patient use and a wall button for backup.

Find the Nurses station or other gathering point the staff use so you can find someone to speak to when required

If you are there for an extended duration you’ll likely amass a fair bit od stuff so locate the available storage space to allow you to keep the bed area tidy. This will also aid the nursing staff and the cleaners.

Identify any available spare power outlets you can use to charge mobile phones and other electrical items. Invest in a portable USB battery pack for emergencies (you can pick these up cheaply on Amazon or eBay)

2. Food & Drink

Review the patient menu and food ordering process to make sure there is something suitable for the patient to choose. In our experience the food was shipped in pre-packed and frozen then microwaved. This didn’t allow for any mix and match options. If it says the fish fingers come with broccoli then that is how you get it.

If there is nothing on the menu that takes their fan cy then it is handy if you have someone who can prepare and deliver food from home that you know they will eat.

Keep plenty of drinks and snacks available as the meal times may not always fit in with their need to eat or drink.

If you need special aids for eating / drinking make sure you have them available. The hospital will likely have sippy cups and straws but that is about it so bring items from home if required.

Don’t forget that YOU need to eat too and if you are hungry then you won’t be on you’re A-Game.

3. Entertainment

When you are lying or sitting around all day it can get incredibly tedious for both yourself and the patient so have a ready supply of items designed to relieve the boredom

i. Books

ii. Magazines

iii. Newspapers

iv. Puzzle Books

v. Card / Board games

vi. Handheld Electronic game systems – NDS, PSP etc

If the hospital has a personal bedside TV it will most likely require payment to use it. The system we had was free between 8am and 12pm for channels 1-5 but was around £8 a day for unlimited use – a few pounds more if you wanted movies or sports.

If you are going to be in for a while it is a good investment and you can usually get a discount if you buy multiple days at a time.

You can also tune into the local hospital radio station free of charge  at any time

Find out if the hospital has free wifi as when you are deep in the bowels of an old building you may not get a decent mobile phone signal.

If there is no wifi but you can get a signal then you can use your phones wifi hotspot functionality to connect other devices to the internet – just watch your data charges

4. Know the Routine

Make a note of the timings of the various hospital routines

i. Meal Times

ii. Blood Pressure / Temperature checks

iii. Tea Round

iv. Medication Rounds

This is especially useful if the patient likes to know what is going to happen when and is not fond of surprises. It prevents anxiety and gives you clear windows to use for the toilet, washing and trips away from the ward for exercise and fresh air if appropriate.

Get to know which staff do what and which colour uniform signifies which role as there is no point asking the tea lady to remove an IV

5. Keep Notes

For peace of mind keep records of any medication received and when as at busy times you may need to remind the staff that it is due. Delays during the day can lead to medication being given late at night when you’ve just got the patient off to sleep. We had a day where all of the IV’s were done progressively later than originally planned resulting in the final one being removed at 1am. Not fun when all you want to do is get some sleep at the end of a long day. 

With the constant changing of shifts and staff make sure they all follow the same process and if you have been told that something has to be done a certain way the insist that the proper processes are followed

For instance – Sam originally had a cannula (a connection into a vein similar to having a blood test) fitted to deliver antibiotics and this is a simple screw connection to the IV which just needs capping off when complete until the next use. This was replaced after a few days with a PICC line which is a very narrow tube that passes up the upper arm inside a major vein and round to just above the heart – this is suitable for long term use and doesn’t need to be replaced regularly like the cannula.

The process for using a PICC is a lot more complicated that the cannula and staff need to be properly trained to disinfect the connection and flush the line before and after using.

On two occasions I had to remind the nurse to flush it after use and twice an untrained member of staff disconnected it as they didn’t recognise it as a PICC (one even argued with me that I didn’t know what I was talking about until I told them that the surgeon who fitted the PICC explained the whole process and to remind nurses if they forgot.)

I understand that everyone can be extremely busy but if I make a mistake at work then maybe someone can’t login to their PC for a few minutes, but mistakes in hospital can have more far reaching consequences. Keep your eyes peeled and your wits about you

Things can get confused if the shift handover is not done properly and we had nurses giving us tablets to take even though it should have been in liquid form as Sam cannot swallow pills properly.

6. Ask Questions

Don’t be afraid to ask questions. For most of us this will hopefully be something you only do once or twice and not an area you need to be an expert in, but if there is anything you don’t understand then do not be afraid to ask. In my experience the staff are only too pleased to explain but like all experts they assume everyone already knows what they are talking about.

7. Noise

Hospital wards can sometimes be a noisy place even if you have the comfort of a side room.  We had to listen to women giving birth in the adjacent maternity block and a dazed and confused old man walking around the ward ordering everyone to leave his bedroom.

 

Add in a gentleman struggling with severe constipation and a woman with a broken limb and it was sometimes like living in a Zoo.

Even the staff sometimes raise their voices when dealing with difficult patients or when in discussion with colleagues

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If your patient is sensitive to noise then I’d recommend a good set of headphones and a portable music player or some ear defenders to mitigate the problem. 

Ear plugs for yourself may also help you get a good nights sleep as the ward can sometimes be noisy in the dead of night too.

8. Time Out

Where possible get someone to relieve you every so often so that you can get out of the ward for a walk, get a coffee or head to the canteen for something hot to eat.

Being on the ward 24/7 can be hard work and the patient can also benefit from a short break away from you as even the strongest relationship can be tested under stressful situations.

If it is an option try to get someone you and the patient trust to stand in for a few hours or even for a night to allow you to go home to recharge your batteries 

9. Where do I sleep?

In my case this was on an NHS mattress laid on the floor at the foot of the bed with sheets and blankets also supplied.

Get this sorted as soon as you arrive as my first night was spent laying on the bare floor with a small sports bag as a pillow – not the most comfortable night I’ve ever had (not the worst either but that is another story)

I’d advise taking pyjamas and/or a dressing gown or even sleeping in your clothes as having to get dressed at 4am to head off down the corridor for a pee is not the best situation.

10. Don’t Stress

It is easy to say but when it is a child or other family member that is ill then the stress levels are already high all round

Just remember that you are in the right place and everyone around you is a professional and knows what they are doing (despite anything I may have said earlier)

Getting angry or upset doesn’t help you, the patient or the nursing staff and remember that you are being relied on to be the calming influence.

Having said that it is sometimes helpful to have a good cry when everyone is asleep and I’m not ashamed to say that even I had my moments

Finally, I hope none of you ever need to use the tips in this guide but it you find anything here that makes your stay more comfortable then please let me know.

If you have previous experience of a hospital stay and have any hints or tips on how you survived the ordeal then get in touch and we can share them with the community

Kevin