The past year and a half have been hard.
My daughter had leukaemia, then a stem cell transplant, then a lot of complications.
After a long time in the clinic we are finally home, with twice weekly visits to the day clinic for checkup and infusions.
My daughter is 22 now, was 20 when diagnosed, and I was very much involved in the daily care. This has been difficult for everyone and I feel that I need to write about the experience before I can move on to even thinking about doing anything else. Also because I have been talking about it non-stop to anyone who would listen so this will hopefully work as a closure for all of those conversations too. I appreciate you all so much ❤
I went into the experience expecting to work well together with everyone, to collaborate on caring for my child. That's what they do, and that's what I do, isn't it? I've finally learned to work with people after all this time, haven't I? I can collaborate. I like communicating. I even like people now.
Well… from the very first day it was clear that this was not going to happen.
At the same time, I didn't have the option to do what every good patient should do, which is shut up, listen, and not talk back. I had to speak up and get involved from the very first day. The nurses weren't made aware of the autism diagnosis, even though the doctors knew. We didn't have a good start. So I was dealing with the shock of the diagnosis but also trying to do battle on all sorts of fronts. There I was, the super difficult patient mum.
Over time, in the months of the first long hospital stay, with a lot of trial and error, I learned to adopt a routine that would allow me to be in the clinic but also get time to recover for the next day. I knew that in the children's clinic, it would have been standard for parents to be there. This was not the children's clinic. It would have been so nice to have help from someone who works on both wards to give me support in finding my feet, but that didn't happen. Because I was already burned? Who knows.
Generally it would have been great to have help in dealing with the organisation. Because now we were into the routine of waiting for the rounds to happen at some point before lunch and then speaking to doctors who worked as a team but also felt like they had personal responsibility. And wasn't it my duty to also work well with them? I understand working well as building a relationship. This was an unusual case and they had to communicate differently, in a different language, with an autistic patient, with a mum who was doing much of the translating, both emotionally and linguistically. I fully understood that this was hard, I was there to support and as a result, I only felt like a disturbance. I picked up on how much pressure this put on everyone and was still not able to do anything about it, I didn't even get to have a talk with the people involved, outside of the daily rounds. I was not told who was responsible and when the doctor who seemed to be responsible (and who had expressed appreciation for me being there, the only person to do so that entire year) disappeared from our daily lives, I was not told who was going to be responsible now. When I asked, I got nothing.
I then absolutely felt responsible for the disappearance. Maybe I was doing my job all wrong, maybe I was expecting too much when I expected to have good relationships as a base for working well together. But then there was no way of asking anyone for help. I even contacted the hospital comms team and asked if there was any way to get advice on how the organisation worked, they referred me to the complaints department.
After 8 months of nearly daily contact with the hospital, when we were gearing up for the stem cell transplant, I finally got the chance for a personal chat with one of the doctors. Who absolutely didn't see a problem anywhere and thought I was fully entitled for having a chat with any of them, every week if I wanted to.
The stem cell transplant happened, failed, there was a stem cell boost three months later, there were complications of complications, all in all we spent 203 days in the clinic. There was a traumatic break in February, when a brain lesion was diagnosed. We had been muddling through with more or less good working relationships, at least on the surface, when suddenly my child was not my child anymore. Everything was different, our way of supporting each other in a cold environment was gone, my child was gone and felt like a complete stranger. I was completely traumatised.
At the height of that crisis I had a free and frank (ahem) chat with the young doctor who had been our main contact during the time on this ward. The phrase "let it go" fell when I tried to discuss any of this, but of course, his view of me was entirely based on previous communication difficulties and I couldn't very well ask him to let that go. I finally mentioned to him that I could feel everyone's frustrations. The young doctor said the nurses were frustrated because their usual system of giving feedback to the doctors about how a patient is doing wasn't working in this case because of the language and communication difficulties. So they reacted by taking it out on us rather than trying to talk about it – taking it out on me, naturally, because they would never take anything out on an actual patient, and anyways, my child wasn't communicating. Never mind that MY CHILD HAS AUTISM AND I AM HERE TO HELP WITH EXACTLY THAT. Sorry, I just felt all that again. The fact that there was no one to ever try to discuss this with still seems absolutely mind blowing.
This very basic difficulty of ever actually having a conversation with me that wasn't "this is what's happening medically, this is what we are doing about it" was a problem I couldn't solve. Every time I tried to make myself understood, it was shut down, every time I tried to ask for a chat, it was one more bad tick on my already bad score board. It became worse and worse over all these months. Now at least I had some kind of confirmation of this in the immortal words "Sie haben ja Recht", "yes, you are right", there is frustration swirling all around you.
There were a lot of ways I was trying to deal with the awareness of how much frustration I was causing and the total impossibility of doing anything about it. Because you can't make people listen, least of all from a position where you are already known as super difficult patient mum. I figured the only way to deal with the negativity was love. So I opened my heart, felt empathy, was there emotionally, responded in the moment. I made things, I wrote poetry, then proposals, I took all the help from the psycho-oncologists who came around, I tried to find my own outside help from a psycho-oncologist, which is a hilarious story in itself. I looked at it from the point of view of how the organisation works in general and asked questions. I tried to keep my brain going – if our doctors don’t treat me like an intelligent human being, someone else will. And people did.
When I had a problem I communicated it directly.
This is very much not done in Germany. I can not possibly emphasise enough how much this is not done. You don’t, you just don’t. You sit there, say nothing, do nothing, you feel terrible but you don’t let it out. Oh no, definitely not. Feedback is terrible, you’re criticising, you’re a bad person. To me, feedback is what an organisation should be requesting, appreciating and using for positive change. But that’s not how this organisation does things.
At the very end, when we were out, I closed the chapter by asking for one more chat (with someone I hadn’t completely burned my bridges with) and then writing them three suggestions. With long treatment times, can you rethink how you deal with people, can there be guidance from and communications through a contact who is not a doctor, because they have too much pressure already? Can you be more transparent as an organisation? And can you rethink how you feel about emotions?
The reply was “Remember, not every patient and family member has the same needs”.
This is fine. I acted from my best conscience. I didn’t ask for anything that wouldn’t benefit everyone, the people within and the people coming in from outside and dealing with the organisation. I know organisations don’t have to work like this, but I also know that I am not in a position to change anything about how this organisation works. I would have considered it a big win to have my feedback considered objectively useful rather than subjective criticism, because in my mind I don’t speak from the point of the super sensitive complicated non-adjusted human being but from the point of view of someone who has experienced other, more agile, human organisations, who are more suited to sensitive, caring, thoughtful people working in them. But it is fine to not have gotten there. This was never my job, this was just a hobby, a distraction from my actual job, the care for my child. And I’ve done that.
And what is probably the most important thing is that both views are valid. I am a super sensitive, complicated, not well adjusted to German culture (OF NON-COMMUNICATION AND PUTTING EACH OTHER DOWN, ugh) human being. It was a difficult case. Everyone gave their best.
I don’t need to keep fighting this fight.
Now, what’s next?