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