Capacity and Choking and Being Prepared

Foxgloves and thistles at the top of East Hill where we drove on Sunday evening. We used to walk here lot when we lived in West Hill  - long rambling and often muddy walks. Robin stayed in the car this time, I took a few photos - loving the view, the clean air, the  memories - and then we drove home.

Yesterday we had an expedited appointment with Dr H - lovely South African consultant neurologist.   It was a last minute cancellation - somehow Robin got to the top of the 120 people on the waiting list. Maybe because when I rang to change the appointment in October the only one his secretary  could give me was in November 2017, I said Robin may not make it till then.

Dr H talked to Robin about the PEG feeding tube. Which Robin doesn't want. And is his right to refuse.  Dr H said he was satisfied that Robin has capacity to make that choice i.e. he understands the risks and benefits and consequences, and can communicate his wishes. Anyway there is no rush about it and he can change his mind later on provided he's well enough to have the small operation - ie he can breathe lying down.

Afterwards we drove out to Killerton House - our second home in the country -  and when Robin cough/choked on his apple juice and flapjack in a frightening way, I said we won't do this again for a while.  It's all too distressing to drink and eat in public - for him, for me and for the public.   I know I said the same thing ages ago but we carried on as it wasn't that often.  Now it's often.

Today he has been tired again - came home early from both his trips out this morning and this afternoon. Clearing his throat a lot.Tonight he ate a big supper - big for him anyway. And peed on the floor again. Don't think he can control it.

My sister has been with me today, steering me through the minefield of paperwork to find the correct details to send to our accountant to complete this year's tax returns.

And sorting out all the paraphernalia accumulating around the hospital bed in the dining room. 

 And reminding me to not worry so much about what's going to happen in the future.....to be prepared but not over -prepared and to trust that I can deal with whatever happens when it happens. And not before.

I'm counting the days till my respite week starting on Monday.