Putting Off The Day Of The PEG

Damian Hirst's Verity statue in Illfacombe in North Devon - our destination on Saturday. I can admire the feat of it ....the skill.....but I don't like it.

Last time we came here,  co-incidentally a year to the day, 27th June 2015, we had a picnic on the sloping grass bank, walked from one end of the town to the other and up the steep hill to St Nicholas's chapel and licked ice cream cones sittings  on the harbour wall.

 And we had no idea that a year later  Robin would not be able to either sit on the grass, or hold a plate on his lap.

This time we parked by the statue, had lunch in a nearly empty pub - Robin had a few mouthfuls of a huge plate of macroni cheese - I had a few myself while I was waiting for them to bring me a second plate of fish and chips as the first one was cold. We bought ice creams - in tubs this time - but I ended up eating Robin's( blackberry) as well as mine( strawberry). He said it was too cold. I think his tooth might still be sensitive after the nightmare filling. Then we drove home again.

Today....

In Sidmouth today after Robin's hands-on healing session with our lovely healer friend. Robin says he  always feels better afterwards.  She says she can only trust it helps him. I always doze off while she's doing it, so it helps me too. 

This morning, the phone rings the minute we get back from doing some chores in town. It's the MND co-ordinator I've been trying to speak to for ages but we keep missing each other.  Then the door bell rings. It's the woman from the Care Agency come to interview us about setting up some morning visits for Robin to get him up and dressed so I can have a break. I let her in, the phone in my hand.

I  suddenly feel overwhelmed and wobbly and  find myself crying into the phone to the nice MND woman.....trying to talk about the possibility of PEG feeding for Robin ( tube in the stomach) .... and when should we do it. She says when is a better time to call back...I look in the diary ...there isn't a better time because it feels like every minute of every day is already booked up with appointments. In the end I say I'll try and ring her back her tomorrow after I get back from my visit to Taunton and before Robin gets back from his outing with his carer.

 Then I make tea for the woman from the agency and we start filling in the forms which take an hour and a half. After a while Robin says he has to go and lie down so I take him upstairs and undress him and get him into bed and go back to the woman from the agency and explain Robin's routine and what he likes to eat and where he went to school and how often I want someone to come.

 I say 3 mornings a week but there is a waiting list so it may not be till August.

After she leaves I make lunch and hang the washing on the line and then go and wake up Robin and get him dressed and feed him the feta salad while I wash up and gulp down my own lunch so that we won't be late leaving for Sidmouth.

We are late in the end because we get stuck behind a  mobile home on the back of a lorry going at 20 miles an hour.....and my neck is ramrod tight.

After the session  I'm amazed how far Robin walks along the sea front....but then there was the lure of tea and cake at The Clocktower Cafe at the top of the hill. I don't mind what he eats now. He's lost 2 more kilos when I weighed him this morning. So blackcurrant cheesecake is fine.....putting off the day of the PEG a bit longer.