THAT WAS UNEXPECTED. Big week, big decisions, big day. Mother was crying happy (‘it’s better than him being home, because I can be with him for as long I want and know he’s being looked after.’). Brother was relieved there was an end in sight. It was – yet again a sparkling sunny day with dappled sunlight through branches overhanging the road and the journey even seemed quicker than usual.
When we got to the ward, I settled mother and changed the washing over, then went to the nurses’ station to announce myself and get the paperwork to sign. Someone would come to see me bedside, so I return. A nurse brought the whole lot bedside and I immediately baulked, moving her away to a discreet distance. She was really puzzled… well, it just felt tacky to sign these papers in such proximity to my parents. Plus, I’m more dynamic, more in control now; the things I can make happen in the way that I want them to, I will make happen in the way I want them to. End of story.
We retired a little distance away, and I told her I felt uncomfortable looking at the report at the bedside and I wanted to avoid questions from my parents – wanting them to concentrate on each other. She nodded and we chatted about the report, I glanced through it for the important bits, then happily signed off on it. My father’s physical needs are established: now for his mind. I asked about the Mental Competence Fellow… yes, she said, he had been and he had established that my father can make small decisions for himself but wasn’t competent to decide on his overall care and clinical needs
I
I thanked her and abruptly turned, strode determinedly down the ward
I’m not going to lose it
down the stairs
not the lift – I’d lose it in there
and outside. I sat on the bench, head in hands.
I’m not going to lose it. I’m not. I can’t; not now; not in public, on the street in front of the hospital. Phew. THAT WAS UNEXPECTED.
As the sunlight burns my forehead, my own thoughts from that first horrible night – now seemingly so long ago – resurface; nothing can prepare you for this, and I try to decide how I’m feeling. Composed once more, I take the long way back up to the ward, and the nurse I was talking to is concerned as she finds me and we sort of huddle against a door.
“Sorry,” I tell her, “I was about to lose it, and I couldn’t do that in front of everyone – it would upset them, too, and that would have been unkind. I was expecting that – but it was like the ending of relationship, you know? There’s that short period when you know it’s got to end, then right at the point it actually happens…”
She nods. She understands. She explains to me what it means, and I clarify: “So it means that we (I) can make decisions about where he goes – on his behalf..?” She nods, and tells me that the Nursing Home has already been on the phone. I almost lose it again, but this is the opposite sort, and keep a lid on it. I thank her.
I return bedside and father’s distressed. Mother asks me about the papers and I tell her I’ve sorted it all out, no worries; she nods and we concentrate on my father.
He’s jumbling out about his competence assessment: it’s hidden inside a story about a meeting where Top People were out to ruin him – and in his mish-mash of memory and fantasy I hear his concerns about himself and what might happen. I understand the underlying code indicating that the sane and suffering deepcore of him knew exactly what was going on and why. Mother’s at a loss, with placating and soothing words… I step in.
“Hey,” I tell him. “I know. Someone did come to meet with you about things.” He turns to me a little and his hand finds mine… I hold it gently between my two hands. “And I told him that I’m keeping you safe,” I say and he nods. “There’s no need to be afraid, so long as you remember that I am here and I will keep you safe. When you get afraid, you think of me and know that I have got you, and I will keep you safe. You’re not alone because you’re with us in our hearts and minds all the time.” He starts to smile
HE KNOWS! HE UNDERSTANDS I’M TRYING TO GET HIM CLOSER TO HOME AS SOON AS POSSIBLE! HE’S STILL IN THERE!
then a vacant stare and back into fantasy land – only it’s happier. Funny stories about some pleasant things that haven’t happened to him replace the dark tales of paranoia and loss. For half an hour, we hold hands, and he is witty and leading a strange conversation – I wish they hadn’t lost his teeth – and we willingly follow… there’s also actually enough to get a bit of reality in there, too. We don’t tell him. We’re not sure if he would fully understand… but I am sure he knows.
It’s time to leave, and rather than pestering the nurses about stuff I’ve already covered with them, mother actually asks different questions. A line has been crossed. The line is to do with trust, and making the right thing happen. We talk, waiting for the lift. She can feel things are different, things will change soon and so we’re not as trapped as we were. She comments on how much brighter in general he seemed, though still batty. She yearns to have him closer to home to spend more time with him. She has sorrow for how he is. We totter out into the sunshine, and make our way to the bus stop.
Oh crap.
The bus is late.