aka care instructions with a difference V2 (module P1)
I wrote this collection of instructions myself with my eye control. I spent up to 18 hours a day in front of the monitor. I would therefore appreciate it if you would read my recommendations very carefully and take them to heart.
Care instructions, aids for newcomers and career changers, version of 22.07.2022, P. Ruppelt 2022
This is what is written in the first edition of my care instructions, which is already more than 100 pages thick and extensively illustrated with photos (read more here). Originally a loose-leaf collection, in just a few weeks it became, in my opinion, an extraordinary reference work for all those who have to or want to deal with the subject of ALS. In large parts told in a fiction style, so that it is a pleasure to read. In addition, I believe that my deep black humour, coupled with my relentlessly honest, open narrative reality make one or two things I have read unforgettable. Which would be extremely helpful in the case of my own care, concerning myself. Because if I had to name one thing that weighs on me the most - at least in my personal experience, people often ask me about that as a terminally ill person - my answer would be unequivocal: repeating myself. I don't have enough time in my life for that kind of shit.
Ironic that I don't believe in fate. Because just as I'm about to write that nothing has changed, it occurs to me that it was one year and five days ago. My old nursing service kicked me out on Friday evening with the minimum notice period required by social law. The company had been sold to Deutsche Intensivpfflege Holding as far as I know. With the new management, the decision was made to go all out for the more lucrative business with coma patients and co. in residential groups ("Pflege-WGs"). And if that meant feeding an ALS patient with tetraparesis to the wolves in a fortnight, then so be it. There's no other way to describe it, after all, this was August. The month in which, as we all know, no one in nursing has holidays. Talking to me was out of the question. And so the manual was my means of passing on my knowledge. How else could I have instructed a new team in stages over a period of very many months? And beyond. It doesn't get better the longer I wait. It rarely does, and with amyotrophic lateral sclerosis, which is the correct name for ALS, you know one thing for sure. It does not get better.
It does not get better. A statement I have read a hundred times. But what exactly is not getting better?
OK, the catheter in the penis is not exactly conducive to sexual desire. But loss of desire is more complex and happens first in the mind. Physically, if you want to call it that, it works better than ever. When you can no longer masturbate at least once a day because of paralysis of your entire body - regardless of whether you've already had sex that day - and then your girlfriend gives you an organism, that's hard to put into words. If you're into psychedelics you should try that too. You'll like it. It's better than having sex with three women and a man in one day. I must be the only person on the planet who can mentally bridge the gap between a urinary catheter and his penchant for serial polygamy. Old Swede. Catheter. Like this. Anyway, you can pull it out and then I have a six-hour window, um and at.
We were about it not getting better. The state of health and the physical possibilities, forget it. Not being able to eat or drink, catastrophic for a bon vivant and hobby cook like me. Not being able to make music anymore, never playing the piano again and never unpacking the guitar after five joints and half a bottle of whisky around the campfire... Jogging, cooking, driving my 354 hp S4 into the sunrise on the Riviera and thinking if it's a good idea to drop by Monaco again... Everyone has a dark secret, mine is driving, which I'm trying to make up for by buying more and more rainforest. And yes, okay, I admit it, everything about ALS sucks. And yet my life works quite well, with one very serious exception. Problem child care.
Then as now, everyone would think that nurses must know this. Including me. Well, yes, they do, but obviously they are taught very little. If, after finishing my nursing manual, I hear the question again whether the head or the arms should be put through the shirt first, then you'd better not be near me. No, you don't learn that any more than you learn proper suction. Here I object - as with all other topics as well - to the assertion, "I" would just want it that way. If that is so, if it is about my needs in a special way that suits me, because I am the Opinion am so it is good, then that is my Opinion and it will be so clearly recognisable. The difference between a Opinion and a Measurement is extremely important to me. For example, I have shortness of breath is a subjective sensation. I mythat I have shortness of breath. A pulse of 120, on the other hand, is a Measurement. And we don't need to discuss whether my pulse is OK or not. We have it measured. It's just not in order. Or if the mask was put on incorrectly and the ventilator says that it is constantly blowing on emergency mode because I am not triggering, then that is a Measurement and not my Opinion. Just as insensitive poking around during sex is not helpful for the penetrated person, it is also out of place during suction. This is not my Opinionbut measurable Fact. It feels uncomfortable, that's my Opinion. It triggers reflux and damages the mucous membranes, which are, based on the amount of blood and gastric fluid in the secretion, the most common forms of gastric reflux. measurable Facts. It's like the deniers of climate change and insect mortality. We no longer have to discuss whether it's real. Any Measurement confirms that. It is real. And in both cases I am slowly losing faith in humanity.
Quite apart from the fact that we want to keep our feet on the ground. Even with the highest care level and 90% severe disability, I pretty much pay a little more than €2,000 per month into the statutory health insurance and it pays for my care service. Soberly speaking, I am the customer. Nursing emergency or not. If I say I hate body lotion, then I don't give a shit about your opinion.
Long before the onset of the disease, I used to babble a lot, but I always chose my words carefully. I think language is a fascinating and powerful tool. It can be very precise. Repetition does not fit into my world view of what is said, any more than it does in any other area of life.
Now try to imagine what it must be like for someone like me to have to repeat myself in my situation. As someone who is dependent on a speech computer for conversation, which he can only operate with his eyes. Believe me, every single word belongs exactly where it is written. In terms of care, I have too often been forced to train new carers for life.
Three years ago, with my first care service.
Exactly two years ago, when they suddenly cancelled several services due to a notorious shortage of staff, telling me that I would have to take care of the care myself if I continued to insist on nurses trained in my ventilation.
It was practically a year ago to the day that I was thrown out the door again. This time out of pure greed.
And now again. In twelve months, my current care service has not managed to build up a team and, with a few exceptions who have stayed, has sent me one complete idiot after another. People who did ten 24-hour shifts at a time with two different nursing services, first used my shower when they arrived and repeatedly didn't even wake up from the ventilation alarm when they fell asleep next to me in my bed. Nurses who left me wet and naked in bed for two hours during basic care while they did the laundry. And I got a bladder infection. Or the recent case who helped himself to my whiskey collection and shot himself to kingdom come every duty. Even though the management knew about it.
Is it me? Supposedly, no one can treat ALS patients. And my AOK would pay too little. Over 70,000 euros less per year than other statutory health insurance funds. It's no wonder that they can't employ staff for me. I am still waiting for the proof I was promised so that I would believe this and perhaps be willing to change my insurance company. For me, these are all lame excuses. I can't do it any more. And I don't like it any more either. It's so unnecessary. I hope that my guidance will create a better understanding not only among my own carers, but also among you and the general public.
They are in themselves also only recommendations from me. My ALS disease is an asshole. The simplest and most mundane things suddenly become a life task. But not only that. One is never finished fiddling around for new, creative solutions to problems that orthodox medicine and the pharmaceutical industry don't want to know about, because things are constantly changing. That's why this booklet is constantly being updated. Whenever you have suggestions, let me know. I try out everything.
Nevertheless, there are a few things that are really important (to me), even essential for survival. I'll be happy to tell you more about the background and details later. For now, it's important to me that we all know what we're talking about. Because yes, you can have a lot of fun with me, no question about that. But the next chapter is literally my deadly serious. Really. Really really.
Stay tuned. There's plenty more to come. You won't get rid of me that easily. Wink smiley.
