Hells bells. What a sad end to what has been a lovely week.
Spring has sprung in Cowley and both us have been bounding about like new born lambs.
Usually with Steven, we have to do some careful planning and plenty of advance warning about the changeover from the winter to the summer wardrobe. However, on Tuesday afternoon, Steven suddenly announced: ” T shirt tomorrow morning Dad”.
He has also turned his attention to our summer holiday in Torquay and started planning the compilation tapes we’ll take with us for the journey and during the week. So, on Tuesday afternoon, we did our annual tape with songs with “holiday”, “summer”, “sunshine” “beach” in the title. And this afternoon, Steven requested that we do our yearly The Beautiful South tape.
For me, yesterday was idyllic. I didn’t have any clients after 3pm, so skipped lunch and after the last client left, I walked along the towpath to the pub/restaurant by the lock and enjoyed two hours in the beer garden watching the boats navigate the lock. I love how the river has suddenly come alive – the traffic of boats has increased in just one week and people are enjoying leisurely strolls along the bank.
Then this afternoon, reality struck. Steven was watching The Sweet’s greatest hits DVD and out of the blue, announced:
“Dad – Steven Neary is going to die when Mark Neary dies. Steven Neary’s not going to live in M House forever and ever”.
It wasn’t asked as a question. It wasn’t said with sadness. It was a very matter of fact statement. And for someone who fails every single mental capacity assessment that he is set, I thought remarkably insightful.
This has been bubbling for a few weeks now. Since our birthdays in March, Steven has been very keen to know when he will become “an old man”. He has been spending more time than usual looking through the photo albums, focusing on pictures of when he was at school. He hasn’t classified me as “an old man” yet but it is clearly on his mind.
I met with Steven’s social worker the other morning. She came to my new flat. She is one of the good guys. We talked about the future and I said that after I’ve gone, Steven will have the choice of two homes – his current home or the flat. I could see that those two options weren’t seriously on the agenda as far as she was concerned – the third option of going into a home, seeming more likely.
I find it incredible that Steven knows all this. Capacity assessments are about testing the person to see if they can weigh up the pros and cons of a situation and make an “informed decision”. In his own way, Steven did just that but what a bleak picture he sees of his future.
What makes me howl though, is that he is probably spot on.