I Can Do This....I Can't Do This

For somewhere to go on Friday evening I drive us the county lane route to Tiverton.

And stop on the way to take photos of idyllic Devon. 

Climbing a gate to get closer to these sheep I lose the USB camera cable which was in the case.  At least I think it was there. It's the lead I need to download the photos onto my computer.

At home I order another one from Amazon. On Sunday evening for somewhere to drive I re-trace our steps...stop in the same spot....search around in the undergrowth for the lead. And just when I 'm about to give up I see it slung in the grass, waiting for me. A miracle.

On Saturday my sister makes us a gorgeous veggie lunch from all the bounty of her garden. In the evening Robin chokes on his supper.

On Sunday I drive us to Plymouth, at least to my nephew's house just outside Plymouth. Robin loves going there even though we know my nephew and his family are on holiday. We leave the car outside their house and walk the little way to the end of their road to this beautiful spot by the estuary....wrecked boats, seagulls and ducks.

Luckily we find an empty bench by the water to stop for a mini picnic - at least a strawberry and banana smoothie and a soft biscuit.   The scabs above his lip are from when he fell on the stairs.

 From where we are sitting  Robin points our the first blackberries of the season. He still keeps a keen  eye out for ripe ones and says the ones I pick and feed him aren't bad.

Today...

Every morning I think I can do this. 

Every night I think I can't do this.

Waiting for the Community Matron this morning I phone 2 nursing agencies. I've already tried several care agencies to see if I can buy in domiciliary care for Robin - i.e. someone to come in morning and evening to get him up, get him to bed. They are all fully booked or can only come at 10.30am in the morning.

It's the same with the nursing agencies but what they can offer is live-in care - for respite (minimum 2 weeks) or more than that. Like Country Cousins. One of the agencies can offer people trained/ experienced in neurological conditions. I can't work out what I need  - respite or every day care.... Both agencies say they will email me quotes. But they don't.

The community matron doesn't turn up.

We drive to a garden centre near Exmouth for a monthly lunch organised by our lovely MND supporter for family and friends and people with MND.

We meet some amazing people - only one  brave man there with MND with his wife, the others are wives, husbands, friends of people who have died of MND. And they still come to support. I'm blown away by their stories, their courage and humour and kindness and friendliness to us both.

Robin can't understand a thing, only eats a few mouthfuls of his cheddar cheese jacket potato and salad fed to him by one of the women who says,  Let me do it, I'm used to feeding my friend. You eat yours before it gets cold. 

It's so lovely to be with people who know exactly what I'm going through and who would know what to do if Robin chokes and I don't have to explain anything about why he is like he is.

I want to stay longer but I can see how tired he is. We drive on to Sidmouth for his healing session.  He nearly falls asleep while lovely healer works on him - a first.  I definitely fall asleep. Not a first.