Once in a while, relatives and friends of LIS sufferers contact me, desperate to know how to help their stricken loved ones. The following message is my response to one family whose father has been paralysed by severe stroke. Despite a rather downbeat prognosis, he is obviously aware of things and attempting to communicate through his eyes.
I hope I can help.
I’ve been trying to remember that initial locked-in stage, and will try to recall what truly helped me at the time.
As you could imagine, I was so scared – frightened because no one could tell me if I’d be okay (which is obviously the same in your father’s case) because, at the time, the medical team simply didn’t KNOW what the outcome would be! I must stress that I’m not a doctor (obviously), but will advise you of what I believed helped me though my experience.
Firstly, you have to put faith in the nurses and doctors around you. As locked-in syndrome is still extremely rare, medical teams don’t always understand the condition, yet the following points will help them also.
- Your visits should be as regular as possible, to assist the nurses who get little time to sit and communicate so can’t find out what he may or may not need. Start by putting basic information and a list of his likes and dislikes on the wall. For example:
“Hi, my name is ,,,,,,
I like my fingers straightened regularly and my arms outside the covers at night.
I don’t like being left with my arms in such or such a position…”
That sort of thing.
You’ll all be wanting to help, of course, but first he has some big tasks to overcome, such as swallowing, maybe even his own saliva, while getting to grips with his head balance will be sooo hard. And it will also be difficult to get that chest infection under control.
You said he communicates ‘yes’ and ‘no’ by blinking….I wonder if the word board I used may help. I have sent it to you but it’s on my web page: https://petercoghlan.com/2014/06/19/to-all-you-great-nurses-please-please-learn-to-use-a-wordboard-for-locked-in-patients/
He really has to get to grips with some form of communication, although it will seem stupid to him and he may even reject it to begin with. However, the wordboard will be the only way to get through this. Your job as a family is to introduce the wordboard and slowly work with him. Remember, he will get fatigued so may only manage 1 word a day, then 2 words and so on. Blinking and thinking at the same time, plus the whole shock of his situation, can be so tiring, see?
Maybe, you could print off my blog (above) for the nurse’s office and to keep by his bed – that’s if he wants to use my wordboard. He may choose other methods that the speech therapists will show him.
Learning to use the board was everything to me.
. Pan (toilet)
. Pillow (not right)
. Wee (bottle)
Then it progressed.
It will take a long time to hold conversations via the wordboard and there will be frustrations on both sides. Remember, the brain is in shock so everything may take some time to stabilise. Double vision is normal. I seemed to have 2 clocks in my room for a week, I think! Learning to control pee may also take a long time.
All I would say at this stage is: Have a progress book, like a log or diary; keep positive around him; get the communication going; visit regularly and try and find out what’s on his mind. (I wanted more sleeping pills at night and to have boxer shorts on)
At this stage you can only help him through regular communication on the wordboard and being there for the tears. The crying will haunt you (I cried every visit….well, come to think of it every day for 4 months, and then at least once a week for 4 years!)
I hope my book helps more than I have in this message – I’ve put a lot of memories deep into the back of my mind, see…..had to! I couldn’t sleep for 3 and a half years!!
If you want to read my story quickly, you can find it on Kindle and there’s a sample chapter on my web page:
God be with you and all your family. I pray my bit of advice can help. The same goes for anyone whose loved one is locked-in after stroke or brain damage.
Swallowing is the most important factor at this point, followed by communication – both of which will present huge battles. Take one day as it comes and look after yourselves – you’re no good to him if you get sick.
All my heartfelt hopes are with you at his worrying time! May your loved one make a speedy recovery!