ALS affects neither our brain nor our hearing. So for God’s sake, don’t feel the need to yell at us. And please don’t talk to us like we’re kids or mentally deficient. Because yes, we have troubles communicating, but everything is working up there. Speak to us like you would speak to anyone else.
This behavior, for most of you, is due to ignorance on the matter, but some neurologists systematically infantilize their patients when they supposedly should know about the disease.
And the award goes to most of the medical staff with their famous: “So did we get a good night sleep? How are we doing today?”. The use of the “we” here is unbearable, not to mention grammatically incorrect.
I’m sure you mean well but this is hard to hear sometimes, especially for people who are already being treated like children because of the disease and who are psychologically sensitive.
Of course that doesn’t erase any admiration I have for your line of work, which is, for a great majority of you, a calling. You have my full respect and admiration.
Let’s move forward together.
PS: for the carers having to treat patients who were given a tracheotomy, please manipulate the tubes more gently. I don’t know how many times paramedics, nurses, or even specialized doctors moved my tube like it was a garden hose and they were watering their lawn. Luckily I couldn’t say a word at the time but just a look was enough for them to understand what it meant “Do you know where this goes?! In my trachea, so don’t get carried away” (and this is the PG-13 version).
Oh yeah and one last thing that happens several times a day, especially in institutions or in the medical field. When you bump into our bed, you literally bump into us. Recently, one of my private duty nurse, and friend, was hospitalised and the first thing he said when he came back was: “I never realised, every time they bumped into me I thought about you”.
Have a great day!