Giving up is not an option with the mental health saga.
So, for those of you following the story of my autistic brother and the lack of support for mental health these days, is giving up an option? Not in my world it’s not. We haven’t got this far just to just walk away from it.
There are always obstacles
The tools I have to be able to set intentions, step back and not become consumed by the ‘how’ and just focus on the outcome, seem to be very elusive at the moment. Allowing the team to do their work is all well and good, but when the Social Worker gets caught in all the M5 snarl ups last Thursday and doesn’t make it to the meeting to complete the Needs and Care Assessment, and is now ‘out of the office’ for SIX days, my faith in the system does get rather depleted. Apparently, when a key Worker is assigned a patient, they don’t share that patient unless there is a crisis situation. As he’s not in crisis, because he is ‘safe’ on a ward, the Social Worker is responsible. The Social Worker who only works Wednesday – Friday. Admin nightmare.
Rather than having a rant, as that would serve no purpose at all, I emailed to say how awful it must have been for him getting caught in such a nightmare day, and missing all his appointments. He actually replied! Being nice always works, no matter how angry you are. Just take a few breaths. Never write emails straight away, and always, alway, wait a while before you send them. Maybe there is a reason for this delay. Maybe my brother needs to be there a little longer. Who knows?
So, where are we now?
Well, he is not happy at all. This morning he wouldn’t come to the phone to talk to me but I hope he will meet me in town tomorrow so we can catch up. I should know he doesn’t talk to me in the morning. The Care Worker said he was on his bed ‘sleeping’. It was 10am! It’s probably because he is dehydrated. I don’t think he is making the most of the trips and outings the ward arranges for them, but then he wouldn’t because he needs to be coerced into going. He’s not eating well, but then he never has. I remember my mother telling me that as a baby in arms, he wouldn’t wake up for feeds. She was quite grateful, as I was an ‘eyes open, mouth open’ baby…… Noisy! In those days you wouldn’t think anything was ‘wrong’, but it just goes to show, little traits like that are things to note, and autistic tendencies must surely be genetic?
He’s not able the see the plus side
He thinks that feeling sick at the moment is something the doctors can fix, but finds it hard when I show him some breathing techniques to help anxiety as he doesn’t understand what ‘feeling anxious’ is, and feeling anxious is making him sick. Mental health is so much more than just being fixed with medication. There are so many great opportunities for him on this ward which he just can’t see. They have trips out, they have a gym, and a healthy lifestyle programme. Mindfulness at the end of each day is offered, but sadly he thinks it’s like ‘therapy’ and doesn’t attend.
Patience, patience, patience!
I wait patiently for the team to sort another meeting. The new potential flat is being held for him while we wait for the necessary funding for the care that goes with it. His old flat is still empty while he stays on this rehab ward. If only each department would talk to each other, so much money could be saved, but no. Adult Social Care need to take him on before he can leave the care of the NHS. To do this he needs his assessment for his mental health as well as his personal needs, and there is a massive backlog. I know there are people in more need than him, but surely….. something should move along somewhere? I will leave it until Thursday, giving the Social Worker time to catch up on what is no doubt another massive backlog of emails. Then, I shall be on the case again.
In the meantime, it’s Bank Holiday. I can do no more. I have painted the shed. I’m hoping to see him tomorrow, and that will be the usual three steps forward and two steps back! I was on three forward and just one back last week, but I feel after the missed assessment, it will be two steps…. thankfully it’s not a ‘back to square one’ situation. We move forwards. Mindfully!