This past week I undertook a journey to visit a friend in hospital, she was someone who I met 6 years ago whilst in hospital myself. She had been discharged earlier this year after a very long admission and placed in a supported housing scheme. But the toll of going from 12 years of 24/7 support to no more than 5 hours support a week hasn’t been easy.
The reality is that in just a few months she has had 2 acute hospital admissions and is struggling to cope after years in an institutionalised environment. I have seen her quite regularly but I hadn’t seen her this unwell for many years until this past weekend.
The visit was short as my friend wasn’t able to cope with a long visit however I felt good to have visited her and helped her. However what caused me difficulty was the words of my daughter as we left the hospital. I had stated that it was upsetting to see my friend is so unwell and I asked my daughter how she felt, her response shocked me greatly. She stated that she was fine as she was used to seeing people this unwell having visited me frequently when I was this unwell. I asked her for clarification as I had never in my opinion been that unwell.
After a rather lengthy discussion it became very apparent that in my daughters opinion I had indeed been as unwell as my friend is currently, this was something I had never fully realised. To think that I had been so unwell I couldn’t string a sentence together, couldn’t stay awake and was so doped up on medication that I couldn’t stay focused or hold a cup safely.
My daughter tried to explain that I had been like this and worse and she had often travelled to visit me for over an hour only to get a few incomprehensible words and then have to leave. I started to cry, because I had never realised this before and I felt guilty that I had put my family through all this. It was if you like one of those lightbulb moments when you suddenly see things clearly for the very first time.
I have spent time since thinking this over and talking to my sons as well to ask for their views, it is a harsh reality to realise that at times in the last decade I have been so unwell as to not realise it. That I have been so unwell I haven’t been able to do basic tasks like string a sentence together or hold a cup of tea without spilling the contents. It’s so hard to realise that I was so doped up on medication I no longer walked but shuffled.
My children tell me they were often relieved when I was like this as it meant that for a brief period I wasn’t in any position to try and end my life. Certainly as my daughter informed me it gave them some light relief from the nightmare that was my desire to take my life.
I have felt so wracked with guilt at the fact my children had to see this, especially when at the worst times they were still of school age. Yet having reflected a while and spoken to my psychologist I realise logically at least I have nothing to be guilty about, I was unwell and couldn’t help how I was. Yet it is still hard to accept that I was once this unwell and whilst I am no longer like that it is still frightening to have never realised I once was before.
I know it is going to take me time to fully forgive myself deep down, to accept I am not to blame for the things that I had no control over. I’m sure some of this is a result of my past and the way I was to blame for everything no matter if it was out of my control.
The visit also raised other issues for me this includes the lack of support available to people leaving long term hospitalisation like my friend and I have both done. It also raises the issue of medication and it’s impact and the often over use of medication in psychiatry, which seems to increase in an inpatient setting.
I know that my friend will not be alone in being failed by services which seem to think it’s acceptable to discharge a patient with such low level support on hand. This is the harsh reality for many people but in my friends case she was hospitalised for over a decade, and so was very institutionalised and required consistent and reliable support. Support that would have allowed her to reintegrate into society in a safe manner and not send her on the revolving door of admissions which seems to be the case currently.
The other main issue I feel is that of medication over use in hospital, I can recall being heavily medicated during my time in hospital. The reality was if something didn’t work they’d add another drug on to your medication chart rather than take any away. Surely this cannot be the solution for many people, I’m not saying medication doesn’t have a role to play it does however that needs to be controlled in a safe manner. The fact is I left hospital taking so many pills at their maximum dose and without much monitoring or control of their effectiveness and I know I’m not alone in this.
I will be visiting my friend again soon and can only hope the staff treating her consider her needs now and in the future. I do wonder if she has any awareness of how unwell she is, I can only hope she hasn’t currently. But I am certain if the day comes when she becomes aware that like me she will feel shock and distress too, I know that whatever happens I will be there to support her.
Copyright DID Dispatches 2014