Guest article by Yvonne Butter
For all those who don't know me yet or know me or probably know me somehow.... and why I have decided to support relatives of people in intensive care who are cared for at home online... ?
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I came to this wonderful planet over 40 years ago.... Until I was 30, my life was quite "normal". Education, further training, holidays here and holidays there... 6 weeks on the Camino de Santiago, nothing else special.... Which isn't bad.... maybe...., but not particularly exciting either... Which isn't so bad either....For one or two people at least
The year is 2014 and I have finally completed my specialist training as an intensive care nurse. For 2 years, I was tormented by our dear practice instructor Irmgard (sorry Irmgard, it was really nerve-wracking at times)...
In July/August 2014, a young man, 39 years old, with ALS (amyotrophic lateral sclerosis) was in our intensive care unit. Continuously ventilated with a mask due to pneumonia. After days on the mask, a discussion with our former senior physician (Florian, you were one of the best intensive care doctors I was allowed to work with!), a tracheotomy (tracheotomy) was advised.... I drove this young man to the operating theatre for the tracheotomy and picked him up later... A short time later, everything changed for me....
When he was transferred home, we really got to know each other and fell in love. Yep, that's right! I fell in love with a ventilated person who was already in need of care and whose voice I had never heard live, as he could only communicate with a speech computer and would most likely die in the next few months/years... Is that crazy? Yes, in a way it is! But that's life sometimes...
When we met, I was already planning a time-out for 2015.... Half a year in Australia was planned... with the lovely Karin Kemp
The first few months of our relationship were wonderful, despite everything that stood in the way... And then, shortly before travelling to Australia, the intensive care service cancelled... Worries and problems tore us apart. The next service was about to leave his flat. At that time he lived "alone", in a separate flat, family members lived in the same house. ?
The departure.... My guilty conscience was already there again and again a few months before. But he kept telling me "do it", "it's a dream of yours", "I'll wait for you and then we'll move in together"... I also couldn't and didn't want to let Karin down, who was looking forward to Australia at least as much as I was, apart from all the problems...
At the airport.... He gave me a letter to open on the plane!!! Luggage checked in... And then came the message.... "I have to go to hospital, the new intensive care service can no longer look after me".... "Please only open the letter on the plane" "Everything will be fine"... I immediately contacted "my" intensive care unit and he was given a bed there. What a situation, alternating between fear and anger. I looked into Karin's eyes, who I think was also scared... I was caught between two stools, on the one hand I wanted to go back and on the other I didn't want to let Karin down. On the plane, I opened the letter......
I "endured" it in Australia for around 3 weeks, I was constantly thinking about him at home... I was always informed about how he was doing. When the transfer was planned because at some point there was no longer any reason for the intensive care stay and he was to be transferred to a nursing home "with a ventilation place" because no other intensive care service could take him yet, I almost freaked out. I booked a ticket and left Karin "hanging". I'm still sorry
He was in the nursing home for exactly half a day. Our provider wanted to do a device familiarisation there... Waited two hours, nobody came, no nursing staff, the home manager kept saying "that's no problem with ventilation".... An old suction device was brought in... Which no one seemed to be able to operate properly... The foot section of the bed could not be raised, but this was necessary so that he could operate his bell (which was always at his foot) with his foot... "How am I supposed to call in like this"? He was otherwise completely paralysed.... "We can see that from the oxygen saturation, if it's below 92%, the beeper goes off"..... This was followed by fear and panic. Silke and Helmut, you were there....fortunately.... The fact was, he couldn't and didn't want to stay there... Our provider said there was another solution... Call the emergency services... No sooner said than done and he was admitted to the nearest intensive care unit. Some time later, I walked in the door of the ICU and he had to cry, he never wanted to "destroy my dream" he said (and didn't) and yet he was overjoyed to see me and of course I was too. The wonderful senior doctor on this ward said "you won't come home until an intensive care service is organised, until then you stay here, I'll think of something".... Thank you that there are people like that....
Then at home, it went on.... exhausting, emotional, beautiful, sad and funny moments followed.... More on this in part 2 sometime....
P.S. I'm not asking you for your opinion on whether you would have flown or not or whether you would have done something like this at all if you had met a "terminally ill" partner. This was entirely my/our situation, my decision and I'm sharing it so that you can get to know me a little. Without discussion...
