I almost had a guilty conscience at times when writing my last series of posts Indifference, Ignorance, Impudence, Laziness. Because every now and then there are moments when I think something has clicked. A friendly smile, an apparently good mood. I almost want to say that they care about me, that they are interested in my well-being.
But already the cut comes. I have done nothing. And nothing happens. No more bedding, no more suctioning, no more foot bath prescribed by the doctor. Everything fails.
Whenever I call, I am "helped", but my keeper is gone again faster than he was here. As if he's trying to break the last speed record every time. Madness. Tonight I woke up once just before the ninety minute bedding. I once pretended to be asleep and watched myself being traded in my sleep. Old Swiss. That's even more listless than during the day. I didn't even know you could "bed" a person without covering them and without touching their arms. I can hardly breathe now because my arms and shoulders are really squeezing my chest. Right now, when I'm writing, I'm lying there completely crippled, bent and crooked, just listlessly throwing up. The mask is blowing into my eye, my head is bent and my drool is already running off the pillow into the bed. The pillow was so wet half an hour ago that even my nurse couldn't see it. And turned it over. But soon the day shift will come and everything will be... You know the saying, you can't get much worse.
Tonight. Breathing problems. I call him, explain for the I don't know how many times that I must not be put on compressed shoulder blades. I have ALS and because of this disease I cannot stretch my shoulder muscles independently. If you squeeze my lungs with a very invalid shoulder position, I have a hard time breathing. Because the way you bed me is the way I lie. That's just the way it is. Get over it.
A few days and nights pass. I wait patiently for us to get our act together. But he doesn't want to. He just doesn't want to. He has no desire, no drive, no discernible interest. When colleagues ask him if he's on duty again tomorrow, he answers with "I don't know, maybe". Well, he didn't, as it turned out.
This morning, once again an oh-so-typical situation. I was put into storage at 5:02 am. Also only because I would have rung the bell. Once again I could hardly breathe because the humidifier was not filled up. As a result, the remaining water heats up faster, evaporates and condenses in the hose. Some of it runs through the mask into the mouth and nose, the rest clogs the ventilation tube. Every single stroke from the ventilation must first shovel its way free to the mask. Even as an outsider, you hear a loud "plop!" with every single breath, and now imagine how loud I hear it first. And with every breath I first get no air at all and then with an abrupt bang I get it all squeezed in. It's crap. And unnecessary on top of that. That only happens when you work sloppily.
The next storage would have been due at 6:32. At 6:40 it gets too silly for me. I call my nurse. I explain to him that there is water in the hose again and that he should not only empty the hose but also fill it with water. It's not like I haven't explained this a few times already. Roughly thirty times or more. And written. See here. That's what he did, but there was no sign of understanding. And he was gone. He forgot to store me. Unbelievable.
7:00 am. The night is over. The day too. My whole face is full of water from the ventilation and saliva that has already run out of my mouth into the mask and from the mask onto my pillow. I told him to put something underneath so that we wouldn't have the same fuss as last time. here). Well, he tried. The paper was not under me, but next to me. What the hell. He turns the pillow over without further ado. It's simply disgusting how they work here. I have to beg to be suctioned. The ventilation alarms go off non-stop. Disconnect, it says. In German: after what is effectively four hours of sleep (and two exhausting days behind me) I no longer have enough strength to close my lips completely. Air flows out. The machine thinks the hose has fallen off.
7:50 am. I explain to my nurse that the ventilator is already right in what she claims. Quote: "My breathing is really bad right now. I'd like to inhale."
Why do I have to justify that I want to inhale? He could have asked how I was doing. Or he could have finally taken a look at the f**king daily schedule, on which the inhalation every morning hasn't changed for two years.
He just doesn't want to. I don't think it's me. He just doesn't want to.