The final notes on Glenda’s referral are succinct.
Non-compliant with treatment incl. meds. Self-neglect. Can be abusive.
The upshot is that the normal routes aren’t working for her – palliative, district nurses, GP and so on. She’s a difficult customer, and as is often the case, we’re the safety net. The Co-ordinator asks for an update.
There’s serious work going on at Glenda’s house. A full skip in the driveway, debris spilling out and overwhelming the little front garden. Making it to the front door is like picking my way through a landfill.
I let myself in with the keysafe.
She’s in bed, her bony fingers laced together on the outside of the covers. With her chalky white skin and graven features, she could be the alabaster tomb to a medieval knight, except instead of a chainmail coif, she has a paisley headscarf, briskly knotted under the chin. She’s looking straight up at the ceiling, and only moves her eyes slantways to look at me as I come into the room.
‘What do you want?’ she says.
‘Jim. Rapid Response. Pleased to meet you.’
I hold out my hand; she doesn’t reciprocate. I nod instead, put my bag down and explain why I’ve come.
‘I told the last one. I don’t want you coming in.’
‘That’s fine. I understand. But I just need to go over a few things, and if you still don’t want any help, I’ll have to get you to sign this form. Just to say you’re declining. Officially, you know.’
‘I know. I know very well,’ she says.
‘So. How are you doing, Glenda? How are you bearing up?’
‘Well I’m dying, if that’s what you mean.’
‘Are you in pain?’
‘Yes, but please – don’t let’s go down that road. I’m too tired.’
‘No, no. We don’t have to. I’m just interested to see how things are.’
‘The doctor was here yesterday. No doubt he sent you.’
‘Yes. Yes, I think he did.’
‘He can’t understand why I won’t take the morphine. None of them can.’
‘Why is it that you…’
‘I control my pain in other ways.’
‘Okay. How do you mean?’
I sit down, put my bag and folder and everything else aside. She describes a course she did thirty years ago, a meditation retreat, where she learned to treat pain and physical discomfort by means of mind control.
‘I find it hard to talk about,’ she says. ‘But essentially it means holding the pain close up, not pushing it back, and accepting it for what it is. There’s no fighting, you see. No turning away. You simply let it exist, much as we all do. And after a bit of practice it stops becoming something you fear. It just is. And you start to live with it. And it either goes or changes or gets worse, but you don’t pump yourself full of drugs to stop the experience. You let it breathe, things move on, and there you are.’
‘There’s nothing to be impressed about. It’s just a different way of looking at it. There’s too much running away from how things are. When I was in hospital it was the same. The patients were crying out for more pills, more pills. There was no end to it. And the doctors and nurses were falling over themselves to give it to them.’
‘I suppose it’s a practical profession. They like to do something.’
‘Yes – and no doubt the pharmaceutical companies are very happy about that.’
‘So how did you get on in hospital?’
‘I couldn’t wait to leave. I discharged myself in the end. They treated me like I was mad. And they were so rude. There was one doctor in particular who stood at the foot of the bed with a syringe in his hand, shaking. He was saying there were ways they could force me. Getting in a psychiatrist and so on. All because I didn’t want what they’d got for me.’
She screws up her face and shields her eyes, because the sun has come round a little and the curtains aren’t keeping her in shadow anymore. I adjust the angle of them, and she relaxes again.
‘I’ll give you the name of it so you can look it up,’ she says.
‘Thanks. I will.’
I tell her about Fred, a judo teacher I used to have. He was well-known for going to the dentist and refusing anaesthetic.
‘The way he described it was he attended to the pain,’ I tell her. ‘Not that I really understood what he meant. I’m afraid I’m a bit of a wimp when it comes to the dentist. I’ll take whatever they can give me.’
‘Personal choice,’ she says. ‘That’s the key. I’d like to hear more about Fred…’
She agrees to let me do some obs. Unsurprisingly, they’re pretty poor.
‘How involved have the palliative team been?’ I ask her, completing the chart.
‘All they’ve said is Ring us when anything changes. I bet they’re glad I don’t, because none of them know what to do with me. They just want to squirt me full of morphine and be done.’
I bring her in some tea. She sits up a little to drink it.
‘I must admit I’m getting fed up with it all,’ she says. ‘But I can’t afford to go to Switzerland.’
‘That means drugs,’ I say.
She smiles, a tight, fraught thing.
‘Yes, but not in the way they mean.’