This article is part of a series of contributions.
In order for permanent mask ventilation to work well, various prerequisites must be created - according to my personal experience. A very important element is trust. You tend to forget about it if you don't have to deal with it every day. But the bottom line is that ventilation is vital for me. Without ventilation, no Patrick.
This is accompanied by a complete loss of control over my own body. Except for the area around my eyes, nose and parts of my cheeks and jaw, I have already lost control of my physical self.
For me, this means in practice that I place my life in the hands of my carers.
While some take it far too seriously and turn every mosquito into a medical emergency, others are not aware of the consequences their actions have and could still have if we are not so unspeakably lucky. Often enough, for example, a Velcro fastener on one of my masks has failed. So far, help has been quick enough to at least put the mask back on my face as quickly as possible so that I can catch my breath. But what happens when the caregiver has shot himself into delirium?
It doesn't help to keep telling me that it will never happen again. There's no way to sugarcoat it. At any rate, that's no way to build trust. Trust has to be earned.
And that's where everything comes together. There are just a few things that are of a more fundamental nature and unfortunately also have a more or less direct effect on many important actions.
- So I find it difficult when a nurse tells me that he is not well yet and that he needs a holiday so badly. That's just like telling me "Don't worry, I can work". If that were the case, you wouldn't have to keep telling me that. And so you're supposed to suction me at night and make sure my lungs are properly ventilated, which is just about potentially life-threatening work. Very confidence-inspiring.
Repeated keyword: panic attack. The last one, by the way, happened at four o'clock last night. Or rather, I just missed it.
- I also don't really appreciate that the last bottle of painkillers was used more by my carers than by me because several have headaches so often.
- The crowning glory are the colleagues who arrive, smoke, drink and then have to "lie down for a while" because otherwise their migraine will kill them. The fact that my dream balcony is totally filthy because it is never cleaned fades into the background.
In my 43 years of life, I have not met as many people with migraines as I have in my current care service. That may be all, but if a carer can't even get up himself when I sound the alarm because of his own illness, then he shouldn't work for me. It's as simple as that. Bitter for him, but not my job, I'm really sorry.
At least two caregivers have already told me about their migraines, which are so unbearably severe, so violent that even the strongest medicines in the world would not help. What is it that only the worst of the worst illnesses are just bad enough for you? Anyway, they take such strong medication, the strongest in the world, that they are always in a coma for 20-30 minutes. I have to have understanding for that.
Uh, no? I don't have to. I have to poop and die. Everything else is optional.
- I was once told by a nurse that I had the wrong idea about the profession. Because if someone works for my company, gets extra money and super many days off because of 12 hour shifts, then up to 100% night pay and also weekend pay... f**k me, then they also work and not sleep during that time. At least that's how it works in my companies.
It is different in nursing. You have to be happy if people show up for work at all. I don't share this assessment, I have a different theory of causes, but well, what do I know?
- I have no understanding for nursing staff coming to me at 11 p.m. for the third night shift in a row and telling me straight away that they had no time to sleep in the meantime. I would not allow that in my own company because it is negligent. In intensive care for home-breathing patients, three times over.
- It's also completely inane to claim that two part-time jobs have no effect on the full-time job. Everyone can tell themselves what makes them happy. But that's bs.
- The topics of training, team meeting, handover, ... okay, I'll stop already.
It would still be nice if at least my medication schedule was adhered to. In the last seven (!) days alone, I have been given antibiotics by mistake, but softeners and laxatives were forgotten (which is why I am still trying to laxate with suppositories at 11 pm... I was given the wrong inhalation solution, had to do without humidification for a morning because it was forgotten, oh yes, and I had already wondered why we had to turn my head twice when sticking on the last scopolamine plaster. I didn't think anything of it. I would never have guessed that they'd put two plasters on me. Not that a massive overdose Side effects I had the last few nights without knowing about the two patches.
It really sucks that all I do here is complain. Unfortunately, there are few positive things to tell.
What more can one say about it? I am sad about it... sad is the best word to describe it. My entire circle of friends and family is probably horrified and angry.
