Dear Diary,
it just doesn't seem to be granted to me. Just when you think you've thrown up enough this week... when you thought things would change for the better in your care... when you're thinking about whether a change of care provider might not be a wise decision after all....
Then it's time again for a hefty setback. And it's from a damper of my favourite kind. The one where not only I, but also the nurse's own colleagues say it's unnecessarily complicated what she's come up with.
For once, I'm the most annoyed today. After the action this morning, I'm really annoyed. My sister is visiting from Spain and we've lost half a day. My metabolic rhythm is out of control. I've been trying to laxate with Movicol and Microlax for an hour - to no avail. We haven't been able to do any nursing yet and I have a visitor coming in 30 minutes. And in one and a half hours the head of a new nursing service will come by to get to know me. We've been in contact for a while. And I'm so tired.
The appointment later was, funnily enough, one of the suggestions from the management of my current care service. I had accepted the appointment and informed my friends who were to be present at the crisis meeting. And then came, as every time, the cancellation from the care service. From then on, I didn't care what the management did. For the time being, there will be no new appointment from my side. I'm not going to be made a fool of any longer. They get far more than 300,000 € a year for the care and don't manage to come to a meeting for months, although there would be more than enough reasons for that.
I have now simply invited a possible successor. The tension is rising.
A more than exciting question will be who from my current team I want to take with me. The only nurse I trust 100% blindly will - that's my fear - not want to change employers. What a shame. Because if I had an okay from that one person, I would quit without batting an eyelid and go somewhere else.
Even more to lament is the fact that there would then only be two more caregivers to consider; but only if they abide by my rules in the future. I don't want to have to experience such a superfluous drama as this morning again. I had a pretty good night. At half past six in the morning, I should have been vacuuming. But I know the game only too well. Some people can change masks in their sleep. And the others, well, they only manage to change masks when I'm not asleep.
And so it was clear to me on night duty today that the mask would be put on so crookedly again that it would be impossible to ignore the air flowing out on all sides. With a gap of at least 5 mm between the mask and the nose, it's no wonder. I would even say that was a whole centimetre. But I don't want to exaggerate. A blind man with a cane would have seen how crooked it was.
My sister is visiting from Spain and is sleeping next to me. When she witnessed the ordeal this morning, I had the impression she didn't believe what she was seeing. I have to say that my sister has put the mask on me countless times and knows what it's all about. And also that it has nothing to do with strength whether the mask fits or not. It's just a question of technique. When the day service came, he explained and demonstrated the correct technique again. First try, about 80 seconds later, the mask fits like a glove.
Finally I can go back to sleep. Unfortunately, it is now almost 10 o'clock because they preferred to do a comfortable handover first and only afterwards said "Oh, and by the way, the patient has been lying there for over an hour without any positioning and with the wrong mask and would like to sleep. But I can't manage to change the mask. Can you show me again how to do it?". Only to be told after the demonstration "That's it? But I can't, I don't have that much strength". Yeah, right. You didn't even try. Like a little child, really. I feel like I'm in kindergarten.
When I wake up again it is already 11 o'clock. I feel like I've been run over. The day is over for me. I'm annoyed, stressed, hungry and tired. And I haven't had any coffee yet. Anyone who knows me knows how much fuel that is.
My sister asks me if this has happened before. When I answer, sure, it happens to this nurse every other shift, that's why I don't take a nap with her any more and there's another one like her....
I realise that now I have to think about who to take with me. I don't want to ask myself the question. But I have to.
