A Wobble.

In the garden - after the rain on Saturday.

Sunday night I have a big wobble. Think I should bring Robin home with 24/7 live-in care.

Both my sisters counsel me on the phone.

This morning I cry on the phone to the hospice nurse. She advises that at home I would still be the second carer as he needs 2 people now to move him. She suggests a course of steroids to stimulate his appetite. I am not keen. 

I ring the care home and arrange a meeting with the manager and the staff nurse.

 Then I walk in the park in sunshine and spitting rain. And buy fruit smoothies in Waitrose for Robin.

In the meeting they are concerned about his food and fluid intake and they think he is too busy,  has too many visitors, means he won't eat and drink because he's always anxiously waiting for the next person or too tired to eat when he comes back.

We discuss alternative timings. They suggest medication to reduce anxiety.  They say he is very demanding at night and wants to go out all the time. I say I could come back at night to see him. They say no you are doing enough.

They also say I am worrying too much, doing too much...to let them get on with their job of looking after Robin but they will always discuss any changes and when/if he needs more or different nursing care. They are kind and supportive and I feel re-assured.

Robin's lovely carer from the Mede comes to visit him...she says they all miss him and his kisses.

 Then we drive to the hospital to see our nice South African consultant neurologist. When he shakes my hand he notices how cold my fingers are. I say I have Reynauds. He says yes, my ring finger which is blue is the give away.

 He is lovely with Robin -  immediately notices the teeth grinding... gives him 2 injections of Botox in his cheeks to dry up excess saliva and to relax his muscles. Robin doesn't flinch - amazing. I would be on the floor.

He also dictates a letter to his secretary to Customer Services at Easyjet confirming that Robin's situation is grave and there is no way he could fly. We are supposed to be on holiday in Portugal this week. I booked the flights in February when there was no inkling that Robin would be in a wheelchair 8 months later. I am trying to get a refund for the tickets.

He also says come back in 6  months time. Or earlier if I have any concerns.

The moon tonight beyond the telegraph wire.... when I was taking the rubbish out to the front gate.