living space

Marianne is standing waiting for me at the front door. When I wave from the car she doesn’t react, but watches me with a pinched intensity.

‘Would you like me to take my shoes off?’ I say, glancing at the cream carpeted steps rising up behind her.
‘Yes,’ she says.
I follow her up into the maisonette flat. It’s as quiet as a photo in a lifestyle magazine, smelling of floral air freshener and toast.
‘Through here,’ she says.
‘I’m sorry to ask, but I need to be clear. What’s your relationship to Jeremy?’
‘He’s my ex,’ she says, ‘but we live together. He’s dying of cancer. You know that, don’t you?’
‘Yes,’ I say.

* * *

It’s an unwritten rule that the jobs you think will be the easiest and most straightforward will turn out to be the most difficult.

Looking over my workload for the day, I saw that I was down for a support visit with Jenna, the OT. A palliative patient needed a hospital bed, which meant transferring him out of the existing one, dismantling it, letting the equipment company set up the new one, then putting him back in. The notes said he could just about weight-bear, so there wasn’t the usual problem of having to set the new bed up next to the old one and pat-sliding him across. True – the family normally take care of dismantling the old bed, but in this case the partner didn’t have anyone to help with that, so we’d take care of business. Another OT had been ahead of us to case the joint, so it should be a breeze.

I didn’t read too far into the notes. Just the basics. The patient had prostate cancer. His disease had suddenly progressed, and his care would increasingly be limited to bed. The GP had visited in the first instance and identified what needed to be done. Our job was limited to setting up the new care environment, prior to the palliative team going in.

Straightforward.

* * *

Jeremy is lying on his side in bed, one hand crooked behind his head, his legs drawn up. He’s so exhausted we withdraw to the hallway again and talk to Marianne instead.

Jeremy’s room is small and cluttered, a substantial bedside table with a phone, drinks and things to the side, and a glass display cabinet at the foot end, filled with model planes. As things are at the minute, the hospital bed won’t fit, but the first OT hasn’t left any instructions about where he wants the bed to go. I can’t think he means the front room. The maisonette is a narrow, two bedroom set-up. The lounge is the brightest, most spacious living space in the flat. If the hospital bed goes in there, it’ll mean Marianne will be limited to her bedroom and the tiny galley kitchen. If Jeremy stays in his bedroom, though, it’ll mean the busy and sometimes distressing business of End of Life care can be contained more effectively. Marianne seems so anxious and friable, I can’t imagine her spending the next few months confined in that way.

‘I think the bed will actually go pretty well in Jeremy’s room,’ Jenna tells her. ‘Especially if we move the display cabinet next door and put the bedside table over by the window. When the hospital bed’s in, you’ll have more time to have a think about things. You could ask some friends or family to help with taking some stuff away, maybe putting it in storage. What do you think?’
‘I don’t understand,’ she says. ‘What’s going to happen with the bed he’s on now?‘I don’t want to get rid of it.’
‘I suppose we could dismantle it and store it behind the sofa in the sitting room.’
‘Why can’t we put him in the lounge?’
‘I just think with all the comings and goings – carers four times a day, district nurses and so on – it won’t work so well. You need space for yourself, Marianne. This room’s more than adequate. It’s nice and sunny. It’s got a view outside. A TV. It’s perfect, really. It just takes a little bit of reorganisation.’
‘If you think so,’ she says.
‘I do.’
‘Okay.’
She doesn’t sound too convinced, though. The problem is, the delivery driver is almost here. If we send them away to give Marianne time to think, there’ll be a delay before it can be reordered. Jeremy needs to be on a hospital bed as quickly as possible. The care agency will refuse to authorise care on the bed he’s currently on. It’s a manual handling nightmare.
‘It’ll work out,’ I tell her. ‘You’ll see.’

We set to work, moving stuff. It’s a delicate job, shifting the model lancaster and spitfire planes on their display stands, then crystal glasses, trophies and cups. We bus them next door, followed by as many drawers as we can manage from the bureau to make it light enough to slide over to the window.
‘Look at all that dust,’ says Marianne. ‘I’ll get the hoover.’
She comes back with an ancient thing, certainly older than the flat, big enough to ride on, with a huge square light at the front and a cloth bag hanging off the handle. She starts rolling it around, the vibrations of it as brutal as a rotovator.
‘I think that’ll do,’ I say, tapping her on the shoulder and shouting over the noise. ‘The van’s outside with the new bed, so we’d better get on and transfer Jeremy into the wheelchair. Then we can dismantle his bed and make room for the new one.’
‘Just a bit more,’ she says.

Jeremy remains as passive as the furniture, but at least he manages to stand sufficiently well to make the transfer into the wheelchair. We take him through to Marianne’s bedroom, and gently lay him on the bed. Marianne watches the whole business with horror. I’m guessing that the original OT who’d organised the job had explained what it involved, but Marianne was too stressed to take it all in. There should have been a note in the folder, though. I make a mental note to talk to him back in the office.

The bed is mercifully quick to dismantle. We take it through and stack it behind the big cream sofa in the lounge. It’s all pretty neat. We’re sweating in our PPE, but it feels like a job well done.

‘Like I say – it’s only temporary,’ I tell her. ‘When we’ve gone you can ask someone to help you find a better place to store it.’

The delivery driver is fast and efficient, installing the hospital bed in twenty minutes or so. We spend the time talking to Marianne, trying to reassure her, finding out what support she has or might be expecting. It’s difficult, though. She uses all the phrases that suggest she knows Jeremy is dying, but there’s a palpable gap behind them. It’s like someone standing on a beach watching an enormous wave curling up into the sky and thundering towards them – and pointing, and saying ‘Look! A dangerous wave! I must get to safety!’ but standing completely still, watching it come down.

‘The palliative care team will be in touch,’ I tell her. ‘They’re incredibly supportive. They’ll give you numbers you can call to help out.’
Marianne stares at the dismantled bed behind the sofa.
‘It can’t stay there,’ she says.

Once the hospital bed is set-up and the dynamic pressure mattress inflated, Marianne walks in with an electric sheepskin underwarmer, as old as the hoover.
‘He hates the cold,’ she says.
‘I’m afraid that can’t go on this mattress,’ says Jenna. ‘Those straps will restrict the flow of air. His pressure areas will start to breakdown, so it’s important nothing gets in the way of preventing that. And I’m afraid it’s too much of a fire risk.’
‘But he’ll get cold.’
‘This is really well insulated, Marianne. He’ll be fine. And he’s got a nice, warm duvet. Honestly, this will be so much more comfortable for him than his old bed. Plus the carers need a hospital bed to care for him. They need to get either side to roll him, and it has to be at the right height otherwise they’ll hurt their backs.’
She stands holding the sheepskin blanket.
‘He feels the cold,’ she says, then walks out.

* * *

The next day, Jenna calls me over in the office.
‘I’ve got to go back to Jeremy, that patient we saw together.’
‘Why? What happened?’
‘Marianne put his old bed back together in the lounge, then somehow dragged him through.’

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