Saturday, March 22, 2014

the time

There is a power-saving regime in this neighbourhood at night. All the street lamps are out, everyone’s in bed, and the sky is so utterly black, the stars standing out so clearly, in such limitless number, the earth feels like some dark and cluttered plate, falling and turning beneath them.

Even though it’s impossible to read the house numbers it’s easy to find the address we want; the light from its front room splashes across the garden.

Emily’s daughter Maggie is waiting for us in the porch, hugging herself in a chenille dressing gown.
‘Sorry to call you out,’ she says, leading us inside. ‘I didn’t mean to add to your workload.’
‘Don’t mention it,’ says Rae. ‘What can we do for you?’
‘It’s my mother. She’s fallen out of bed and we can’t get her up. She hasn’t hurt herself or anything but she’s just too heavy for me and my husband. She’s through here.’
Emily is sitting on the floor alongside her hospital bed. Maggie has surrounded her with pillows and a duvet to keep her comfortable, untangled the nasal specs and catheter tubes. Emily is completely deaf, so we reassure her as best we can and then set to work. It takes a bit of arrangement, moving side tables, lamps, a radio and a waste basket – and a heavy chair the family have put against the side of the bed as an extemporary means of keeping Emily from rolling out.
‘We’re not allowed cot sides,’ says Maggie, helping us shuffle things about.
‘They say it’s deprivation of liberty,’ says Rae.
‘I know. It’s so frustrating. The thing is, she doesn’t need to get out of bed. She can’t walk anymore. She has everything done for her where she is. But sometimes she wakes up and gets confused.’
‘I know. A cot side would help.’
Maggie goes to sit down on the sofa with her husband, Phil. Even though Maggie is in her dressing gown, Phil is fully dressed in heavy shoes, jeans and a sensible coat zipped up to the neck. He is sitting there so neutrally, with his hands resting in his lap, he could be secretly asleep, a pair of open eyes painted on to the inside of his glasses.
‘She’s ninety-eight,’ says Maggie. ‘She’s been going downhill these past couple of years. We only live round the corner but we may as well have moved in. Nights are the worst. We can’t afford a sitter, so we just have to hope she stays put.’

Once we have Emily in bed, the three of us set everything back as it was and make her comfortable.
‘It’s no kind of life,’ says Maggie. ‘She’d never have wanted this.’
‘Have you thought about residential care?’ says Rae. ‘Only it’s looking like you’re reaching the end of what you can cope with at home.’
Maggie shakes her head.
‘She won’t do it. She wants to die at home. We thought she was fading last month, but she rallied.’
I bring over a substantial bag of medications. Rae writes them down.
‘You’ve got to think about your health, too,’ says Rae. ‘It won’t help if you get sick with stress. I think a spell of respite care at the very least. Maybe it’s time for a family conference with your GP.’
‘I’ll do it,’ says Maggie. ‘I will. In the morning. First thing.’
She smiles bravely – then notices something on the floor. A little clock, lying on the floor half under the sofa where it had been knocked off the side table. I help her retrieve it, and the little black plastic cover. Neither of us can find the battery.
‘Phil? Can you put another battery in there?’ she says, passing him the clock and the plastic back cover.
‘Righto,’ he says, then stands as if invisible hands had grabbed him by the shoulders and lifted him from the chair.
It’s quiet in the front room. Emily has fallen asleep almost immediately. The only sounds are the gentle hiss of the oxygen, a hypnotic, expiratory sigh as Emily breathes out each time, and Phil, opening and closing cupboards in the kitchen..
Eventually he walks back in, a battery in one hand and the clock in the other.
‘How does this work, Maggs?’ he says. ‘I can’t figure it out.’
Maggie takes it off him and spends the next minute or two turning the battery first one way then another, trying to snap the cover into position. Eventually she manages it, and holds the clock up.
‘There!’ she says. Then lowers it again to re-set the hands. ‘What time is it?’ she says.


Blair Ivey said...

Could they not install cot sides and remove them for inspection (I assume some government functionary comes around every so often)?

Spence Kennedy said...

That's not a bad idea, Blair. I think you can get removal cot sides, ones that slide under the mattress half way down the bed. The carers, d/nurses etc who come in wouldn't sanction anything like that, but I think it would help, esp. in the short term. As things stand, I can't imagine they'd be able to carry on like this. She needs residential care.

jacksofbuxton said...

It's a nice thought to spend your last few moments at home,surrounded by loved ones.However,the amount of work involved is tremendous.

Perhaps Emily could go into a home and be allowed back to her home when she's ready to cross on the night ferry.

Spence Kennedy said...

Definitely a lot of work, esp for the immediate family. I think they should be looking at regular respite sessions, to give everyone a break. Timing is everything in these situations, of course. I think in the end you have to take a fairly expedient attitude, and do what works best for everyone.

I think End of Life care could do with quite a bit more funding & research!