Heavy Stones

This morning man arrives to fit shower seat and step riser into the shower tray. All on loan from the NHS.  Last week he was also going to raise up the legs of the sofa to make it easier for Robin to get out of. But today he says he's not allowed to as our sofa has a wicker frame and it's not safe.

Talking to him I discover he's been a carpenter all his life but he now has carpal tunnel syndrome and he makes driftwood art. But he has too much of it. Like Robin's ceramics.

He takes away the electric pillow riser that has been on the bedroom floor for a month or so as Robin doesn't like it. I'm shocked to discover that when we return some of this equipment, like the shower seat, it is just thrown away and not passed on to someone else.  Or even given to charity. He says it's more expensive to get it cleaned. How mad is that.

Tonight Robin says the step into the shower makes him feel unsafe and he won't sit on the shower seat. Luckily it folds up.

This afternoon we have a visit from a lovely woman from the local MND society. She's down to earth, straight talking, practical and very sympathetic. But she hasn't come across anyone in Robin's situation before as it's rare to have MND with FTD. 

She sits at the table with us and watches Robin cough his way through a cup of tea and a soft coconut biscuit. She gives him lots of advice like how to sit and to move his head slowly from left to right when he has a coughing episode.  Which is the best straw to drink from. Which seems to work. 

She says our OT can apply for a riser recliner chair from the MND society and they will pay for it. Provided Robin will sit in it.

She says don't worry about the question mark over the diagnosis. She looks at Robin's hands and the wasting of the muscles round his thumbs and says it is MND. She lost her husband to MND and has been running the local society for  26 years so I'm pretty sure she knows what she's talking about.

Later we drive to Killerton to see the glorious display of azaleas and  rhododendrons against a high blue sky. I cry in the car coming home  - I check out if Robin really understands what MND means for him. He says he does. 

 And suddenly it sinks in to me too. Heavy stones dropping to the bottom of my heart.