More inside and out at A La Ronde with a view of the estuary at Exmouth from the garden.
Even in his absence - with 2 dear people who take him out driving, my day has been exclusively about Robin. And particularly intense in his presence tonight. Very hard for him to settle to anything for more than minutes before he wants to lie down...pee...turn the computer on or off....get up...have a biscuit....a cup of tea...pee ....lie down without his clothes....and coughing all the while.
I start an email conversion about sleeping pills for him with the MND nurse and the neurologist.
I phone the hospital to expedite an appointment with the respiratory professor.
I talk to the Speech and Language therapist about communication aids and make an appointment for her to come next week to re-assess him. Everyone who sees him now says how hard it is to understand him.
I wash all his semi shower/strip washing towels. And get them dry on the spinner in late August sunshine. Washing away the weeks of early morning carers.
I buy another cotton double duvet cover for his bed while I'm in town to have my eyebrows waxed.
I phone the computer man about a problem with his keyboard which is becoming slow and unreliable.
On a big piece of paper I draw out the days of the week and fill in all Robin's appointments with
visitors and carers and enablers and friends and family and healers and supporters and try and work out how or with who to fill the gaps.
So that I don't have to endure another nightmare evening like this one.
I did have a brief respite when I sat, stunned, in the garden in unexpected hot hot evening sun and watched this humming bee scouting flowers.
And I envied her just having one thing to do - to bury her face in a rose and collect pollen- a life's purpose fulfilled in one sweet gulp.
No comments:
Post a Comment