In December Steinar (the ALS patient I take care of) got a new machine in order to communicate.
The new machine is supposed to read the position of our eyes. After some calibration work, the patient should be able to write on a screen with only his/her eye movement.
Steinar tried hard (I’d say) to get used to the new machine but it’s not that easy, even though it sounds quite cool and convenient to type with our eyes. After about 1.5 weeks he gave up and refused to have the machine in front of him.
In one of my night shifts, I installed the mouse that he used to push in order to type a letter on the screen. Why? Because at least Steinar could communicate that way. However, when I came back to work the next night, the other assistants had decided to take the mouse away. Everyone told me that he should get used to the new system and that we should not install the mouse ever again.
As a result? Steinar refuses to communicate with the new machine, and now he doesn’t even want the old system back. He just gave up on typing.
Now we must guess everything he wants/needs. The things we do most of the time are the easiest to ask him about. Do you need the coughing machine? Do you feel pain? Poop? Are you lying OK in the bed?
However, when he answers ‘NO’ to all these ‘most likely things’ to fix, it gets hard to guess.
It could be anything. I tried to spell letter after letter of the alphabet and wait until he lifts his thumb slightly, in the search for a word or a hint. He doesn’t cooperate. Either he chooses letters that don’t go together at all in Norwegian, or he just freaks out and makes crying grimaces. Sometimes it gets so difficult to understand what’s wrong. Unbelievable.
I have had days when I come back home totally drained. I am a patient guy, I really am. But when I do everything possible to help and I my patient does not cooperate, I get irritated.
I don’t judge Steinar because I know the horrible position he’s in, but I don’t understand why he doesn’t cooperate when something goes wrong. What’s the way out of it anyway? Ignoring him and let him cry until he eventually stops? Or keep repeating the same questions over and over again and get successively ‘NO’s’ and desperate facial expressions?
What it hurts me the most is to see him slowly giving up. Perhaps he could at least try a little harder. I know it’s easy to say such things when we’re healthy.
Now he doesn’t communicate at all. We can only ask him ‘YES’ or ‘NO’ questions and wait to see whether or not his thumb comes up. When people come to visit him is the same thing.
Guessing is my only weapon right now.
If he loses the ability to move his thumb, he’ll have to start blinking. Otherwise, it will be impossible to read him.
I really wish I could do more for him. I wish that no one had to go through such hell.