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Prepared contribution, deliberately not up to date. I could have published this article a few days or weeks ago and have deliberately decided against it in order to exclude possible conclusions about the nurses on duty at that time. Because I will clarify this with the QM and QB of the nursing service, but certainly not here. For the story, however, the background is necessary, otherwise one does not understand the context.

You have to do everything yourself. Really true. Once again, I'm at a loss for words. For years I have been asking my provider about a remote alarm for my ventilation. In the meantime, several contact persons have been responsible for me. Each of them told me the same thing. Remote alarm for home ventilation? No, there was no such thing. That was only common in hospitals.

Unfortunately, this statement is of little help to me. Even at my first care service, caregivers often didn't hear the alarm at night because they were fast asleep. But I was still able to sleep without a mask. I could also operate the cough machine on my own. And in an emergency, I could take my various sprays against asthma and the like without help. Which I did practically every night. Today, due to the lack of functioning upper body muscles (inhalation without aids is no longer possible), I can't even do this with outside help.

And then the next care service came. Everything should get better. That's what they told me. Fiddlesticks. At first everything was good. But then suddenly exactly the same thing happened as with my old care service. All the time, the carers were so fast asleep that they didn't hear alarms for hours. And not just with a single carer. No, with several. Several times it even happened during the day. Right after duty started. So it can't be my fault.

Sometimes I was lucky. I was in a Zoom video meeting with my sister. She could then call the nurses concerned on their mobile phones. If that didn't help either, the team leader and the head of the nursing service had to have a go. According to the motto, when the boss rings the doorbell, you can't ignore it. But what's the point? In the acute moment, I got nothing out of all this. There is no prospect of a learning effect either, since the team leader himself regularly slept through the unmistakably loud alarm. And there was no head of nursing there for months.

Change of scene. Once again, a new care service. Everything should be better. I would like to start by saying that I have never felt so well cared for as I do today. I am mega happy. Stupidly, negative experiences trigger people much faster and more persistently than positive ones. And so it leaves a rather bad taste in my mouth when I am wrongly stored twice - by different carers - within just one week. On top of that, they don't hear their own alarm clocks to put me in bed at night. So of course I wake up in pain at night. Quite a stupid thing, that. If I then set off the alarm for 50 minutes, as in both of these cases, and no nurse notices even the slightest bit... then something goes very wrong.

And then the third nurse in a week arrives, who already falls asleep several times during the day and makes me ring the alarm hundreds of times (according to the machine's log) for over 1.5 hours at night. I am drenched in pain and sweat. Because once again he doesn't understand that you don't put patients directly on the shoulder bone. You pull the shoulder out. And pissing off for three or four hours during paid working hours is never a good idea. Especially not as a 1:1 intensive care nurse for a ventilator-dependent ALS patient with tetraparesis. But he does it several days and nights in a row. In itself a reason for immediate dismissal. But what are you going to do, you can't find any nursing staff.

In the end, it's not only me who feels really uncomfortable, but my friends are seriously worried about me. If - as happened during the day - the lid of the humidifier had come off again while the carer was asleep, you wouldn't be reading this. I would be dead now.

His comment on this when I asked him repeated to confront me: After all, I set an alarm clock. I would have come at some point. Sorry, so much stupidity should be forbidden. But hopefully you have finally understood that by now, after Geli and Erik have once again taken over your night shift and sent you to bed. You could at least have thanked them for saving your ass. Unbelievable. Luckily my doorbell is so loud that they managed to wake you up. I've been waiting there for food and drink for ages and three days. And rang the doorbell for over 20 minutes, with the alarm of my eye control and the leakage alarm of the respirator at the same time. Dinner was cancelled once again, but you immediately brought up the subject of the PEG. Very thin ice, my dear, so very thin ice.

The only thing that tops this is the drivel you served up to my physiotherapist. I'm not in good shape, she said. The shoulder is tense and I look tired, she remarked. This nurse seriously says that I have problems with bowel movements and that's why I feel so bad. No kidding, I would have liked to punch you in the face. At least admit that you really fucked up for once.

That reminds me, you've added another one. I almost forgot. You were still on night duty and all my intensive care nurse friends whom I could have asked at such short notice had to work themselves or were on more than well-deserved holiday. So you slept in my bed with me so that you would be sure to hear the alarm. Unfortunately, you still didn't. Mind you, even my long-suffering neighbours heard the alarm. They asked me if everything was all right because the alarm kept going off. So it can hardly be the alarm. And (almost) all the other nursing staff hear it too. Well, let's face it. Whenever you came to work rested after a day off, it wasn't an issue otherwise. It worked reliably for four weeks before.

If I had known beforehand that you don't even have the decency to make the bed fresh after sleeping in my girlfriend's bed linen, I would have let you sleep on the guest bed at best. But taking a shower at my place was once again more important. Well, my breakfast was cancelled, as it often is when you're on duty. Because you show up several hours late every other shift. I only say... PEG.

Nevertheless, the solution would be so simple. I probably won't be able to get my carers not to fall asleep on duty any more. That train has left the station. I'm too tired to jump on moving trains. This train has also left the station.

But it can't be that I'm the only person on this planet who has this problem. And the connection for a hospital alarm is available on my devices. There must be something. Even if the consultants are of a different opinion. So I do my own research again. It doesn't help. I need solutions, not nonsense. Neither blaming nor lamenting help me.

I need results. And fast. Fast. Good keyword. And so I do my own research again. Fucking hell, I'm fast. Two minutes and I find something that quickly gets my full attention. Two minutes. At the most. Rather less. Manufacturer's website, products, ventilation, accessories. First page that comes up: Remote Alarm. Hm... Sounds a lot like exactly the product that my provider says is not available. So I pull myself together and formulate a cautiously written request to my provider. Oh yes, those who know me know that this is really restrained for me. And how much I sometimes have to pull myself together for a little diplomacy.

Hello,

I have asked various staff members several times about this and have always been told that there is no such thing. After another caregiver didn't hear the alarm for 50 minutes tonight, I did my own research. Please tell me I'm wrong, because it didn't take me five minutes to find the following accessory on the manufacturer's website, which is also called exactly the same...

https://document.resmed.com/documents/products/accessory/remote-alarm-ii/user-guide/remote-alarm-ii_user-guide_row_mul.pdf

What's wrong with that? Couldn't it be used on my astral?

If so, what do you need to order such a remote alarm with 20 metres of cable for me?

Kind regards
Patrick Ruppelt

Quickly, unexpectedly quickly, I get a call from my supplier. Using the info I provided - um, you mean the item number I copied from the manufacturer's website? Well then. - they were able to find out .

Now hold on tight.

Not only does this remote alarm actually exist. No, really? It also fits my machine. It does? I didn't expect that, since it's listed as an accessory for my ventilator. It gets even better. The remote alarm is, surprise, surprise, even listed as an aid in the health insurers' catalogue of benefits. So it can be prescribed. This means that I don't even have to pay anything extra for it, apart from the €5 or whatever the co-payment is. And if you think that's all you're shaking your head at, I have to disappoint you again.

Best of all, my supplier even has this crappy remote alarm in stock. Let's see when I can get my hands on it. My order was placed a few days ago. I will report back.

What I could have saved myself in terms of health damage, anxiety, stress, pain and panic if even a single one of the contacts I interviewed at my aid supplier had done their fucking job. They're all morons.