After the last intensive care stay, when it was clear... "a new intensive care service has been found and will soon be available", we decided to go home a few days earlier. To enjoy the peace and quiet again before things really got going with familiarisation etc... Just to be alone for a few days... We had already realised while we were in intensive care that we would move in together, into a nice new large flat where the nursing staff would have a room to themselves so that we would have more privacy. Said...done...
I can't and don't want to tell you everything that happened in the two years that followed, because there simply isn't enough space in this article. I can only begin to describe what it feels like to be dependent on other people. And I wasn't the person in need of care and yet I was dependent. Dependent on people who cared for my beloved friend while I had to go to work. Dependent on them turning up for work so that I could go to intensive care. Dependent on people who sometimes had hardly any knowledge about ventilation, who made mistakes that were sometimes dangerous to patients.
I would like to expressly mention that we also had very good carers!
Back in 2015, I was very shocked to realise how far apart the areas of non-clinical intensive care and clinical intensive care are in terms of background knowledge. At the time, I was fresh out of intensive care specialist training and in hindsight, I know that some people didn't have it so easy with me either, I know that ... Sorry about that...
Only people who have been or are in this situation themselves can understand and empathise with the immense pressure you feel as an immediate family member. No one else. My phrases at the time were always "everything is just weighing on me", "I'm going to pieces here".... This burden at the time, going to work 100% and continuing at home, just care here and care there, because hardly anyone could look after him all by themselves, being a constant contact person, constantly hearing "Yvooooonne, can you come here....", no more privacy and if someone is absent, it's quite clear who takes over the duty. it doesn't matter if I had to go straight to the early shift in the morning after night duty.... At some point, I couldn't do it any more and I cut back on intensive care and switched to full-time intensive care. Sometimes I worked up to 300 hours at home and 50% in intensive care. Until I cut back again on a part-time basis.
I could go on and on telling you frightening stories about the things that have happened, but I don't want to. I want to think about the nice moments, without all the anger, the many fears, the huge amount of worries that hardly let me sleep. Back then, when I was involved in conversations about "little things" and they were turned into a problem, I would freak out inside.
Having experienced all this has already changed my thoughts about problems a lot... Today I know what real problems are and what despair means.
Despite all the negative experiences, we had so many incredibly beautiful and funny moments. I loved it when Max, his son, slept with us and we built a cave with the help of the ceiling hoist.... We loved building caves How often we had friends over and partied, sometimes so long that Frank could no longer use the speech computer (operated with his eyes) and could only read a gibberish of letters and almost fell asleep in the e-wheelchair Yes, you can also get beer via a PEG (feeding tube through the abdominal wall) and many other things. Thermomix level 10 makes everything small
We always tried to live as normally as possible and travelled a lot together by car. If I didn't know which way to go, I just looked in the rear-view mirror and Frank either looked left/right or straight ahead. It's quite simple.... The electric wheelchair also easily managed to drive across the road with two people, which was probably a picture for the gods We didn't want to let the disease take centre stage all the time, ALS was there, yes.... but it shouldn't dominate and take over everything if possible.
I would say we were certainly a real eye-catcher as a couple back then and Frank definitely stole the show from me at times. Because when we were out and about, he was usually the centre of attention - but that was okay for me
Our relationship broke up after two and a half years, after which we were still best friends. Until our last breath in June 2023
(The picture was taken a few years after our relationship, I think it was 2022)
