The ever changing sky tonight from the open sash window of my study on the third floor.
It's been weirdly warm tonight for mid - September. The air still and gossamer soft with damp autumn hints.
An anxious worrying day.
Robin wakes with sore left foot.
He stumbles
His legs give way beneath him.
He doesn't fall.
Just cries out in surprise and pain.
Lovely enabler takes him out to her car.
Holding on to his arm.
I'm afraid it's the MND seeping into his legs.
I email MND nurse.
Talk to Hospice nurse.
Phone Occupational Therapist.
Neuro-physio therapist calls back.
Overall advice - probably not the creeping MND yet.
Most likely the flare up of osteoarthritis in his foot -
from walking up slope in the car park at missed MND lunch yesterday.
Must rest more to conserve energy.
But still.
Need to prepare for commode.
And hoists.
And ways and means of getting from bed to chair. From chair to loo.
From hell and back.
He falls asleep in car of second enabler who takes him out this afternoon.
He's never ever done that before, she says.
Not enough oxygen getting to his brain now?
Letter from respiratory professor arrives.
Says his force vital capacity has declined. 1.73 in July.
1.12 last Friday.
i.e. less puff.
Hospice care manager comes to interview Robin about matching him with a 'navigator'
ie a volunteer enabler.
Who will take him out in her car.
But not do personal care.
Robin sits across from her at the table and beams.
No idea what she's talking about.
But she understands him when he says
she is a lovely girl.
All I manage to get done today is to change the sheets on Robin's bed.
And cook up a pot of green beans and garlic and luscious tomatoes.
In between
helping Robin to get off the loo
with the handling belt
blowing his streaming nose
getting him dressed
and undressed,
moving his arm a fraction to the left in bed,
telling him who our friends are
in the photos I send him
on the computer,
feeding him rice and scrambled egg
on a spoon.
And I talk myself out of worrying about the future.
Which is speeding towards me -
a steam train tooting on its own wobbly tracks
destination unknown.
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