Do you wonder how working with ALS is like?
I can only talk from an assistant’s perspective. Working so closely with a stranger in need is always a bit awkward in the very beginning.
You (as an assistant) fear for the time when you will have to change his/her diaper, when you’ll have to shower him/her, when you’ll have to change his compresses, etc. The person who you are assisting fears for your ability to handle the situations that might occur. All in all, he/she is relying on your skill at 200%.
There is always a team (one nurse + a bunch of assistants) working on the same floor just in case, but I am only supposed to call them in emergencies or whenever Steinar asks me something that goes beyond my responsibility (for example: taking extra medication). Otherwise, it is my job to handle it.
After the first 3 days of training, I had my first shift totally alone with Steinar. I was nervous but so was he. I remember thinking ‘If I were you, I’d be scared too.’. So the first thing I did was to engage him in a conversation with me. And smile. Smile, smile, smile! Smiling is a great icebreaker, it is contagious and I realized how powerful it can be in situations where communication is so limited. The more YES/NO questions I could come up with, the better since it only requires a thumb up (the sign for yes) or no movement at all (the sign for no).
Over the last 7 months, we have talked about a lot of things. The 3 topics that are guaranteed a reaction from him: women, football and beer. All the rest depends on his mood but I usually get answers to my questions.
The TV is on the football channel whenever there is a match. He follows the Norwegian and the English leagues. In addition, he follows Hockey&Ice Hockey and all the winter sports. Basically, he is a sports freak.
Otherwise, we watch ‘Friends’, ‘The Big Bang Theory’ and ‘Two and a half man’. Or any other movie that comes up during the evening. Or listening to the radio. 80’s music!
Some months ago I came up with an idea: games. I downloaded Backgammon on my tablet and we played for some days. It was a lot of fun. He got tired after a while though. He likes chess but whenever I ask him to play it with me, I get a clear “NO”. I tried other games like ‘Four in a row’, ‘Checkers’, among others, but he refuses to play. I try my best to convince him to give it a try, but he’s not easy to ‘break’.
When I work evenings we go through somebody exercises (stretching, folding, rotating arms, legs, feet, hands, etc.). It has to be done, otherwise, his body will get stiffer and stiffer. Until the point when his members are so weak that they will break effortlessly. So it’s always good to push him to move a little bit more than necessary.
At night, between 22:00 and 24:00 he will ask me to turn off the TV and massage his feet. Usually, he falls asleep while I’m giving him the foot massage. Even though Steinar is sleeping like a baby, I must be awake the whole night to make sure that he’s provided help whenever he wakes up. I sit down facing him so that I can keep an eye on him constantly.
No wonder he needs an assistant during the night as well. He is not able to make a single sound! Not even grunting!
The only thing he can do is to type on his screen and what you hear is the short “click” sound (the same you hear when you click your computer mouse). Once he writes what he wants, the machine reads it out loud. But imagine that during his sleep he contracts his body muscles contract due to yawning. The contraction will change the position of the button he uses to write. Because of that, we will not be able to reach the button once his body relaxes again. Here’s where you (as an assistant) come in the picture: you must reposition the button so that he is able to communicate whenever he wants.
Night shifts are long and lonely. So I better keep myself busy with something. Reading, reflecting my habits, cherishing my life, making sure I eat properly, looking up new recipes, figuring out how to make my days more effective, etc. The fact that I’m more of a night owl than a morning bird makes night shifts a lot easier to handle.
I hope you have a better idea of how working with ALS is like. Especially in Norway. It’s a tough job that allows you to give as much as you want; that makes you cherish every single day of your life as a human being; that makes you grow from the inside to the outside; that will give you a better sleep and a greater joy.