How Long?

Sweet potatoes chunks...

roasted tomatoes with fat garlic...

 salty feta cheese, parsley and spring onions. Supper tonight. It doesn't look so good when it's all mashed up together to make it easy for Robin to swallow. But he says it still tastes nice. Especially with the gift of a handful of  French green beans picked from a dear friend's garden.

The TV went on the blink last night. Robin can't watch Family Guy.....so goes to bed early. So wakes up early.  It tasks an hour to get him dressed and ready for the day. Long hours to fill in before his visitor at 10.30 am. I want to send birthday cards....check the accounts..... reply to emails....get the washing on the line.... but give up and sit with him at the table ...feed him a biscuit and cross out the   clues in his Word Search puzzles with a luminous yellow felt tip pen as he spots  them in the maze of letters.

This afternoon the lovely MND nurse visits us. She is the only  MND nurse of the whole of Devon and Cornwall and Somerset. She has an emergency so is an hour late. Robin gets more and more tired and restless while we wait and nearly completes a whole word puzzle.

  Two minutes after she arrives we sit at the table and he says "I have to have a crap".  Back at the table he says, "'I have to have a lie down.''

I've been waiting of this appointment for weeks so that she can talk  to him about PEG feeding and I want her to check if he has capacity.

I ask him to stay for 5 minutes to talk to her and then he can have a lie down.

She is so kind and clear and explains the consequences of not having a tube fitted. Robin says he doesn't want it -which is what he has said all along - and that he's going to die anyway.

She says he absolutely has capacity  to refuse it and none of the health professionals would recommend it anyway now as his breathing and lung capacity are so compromised.

After I get Robin undressed and into bed I ask her how advanced she thinks Robin is in the progression of the disease.  She says two things. He probably has a year to eighteen months and it's  the deterioration in his breathing that is most likely to end his life. Or dehydration from not being able to swallow. Or pneumonia.

And saying NO to things is just a tiny way to feel he has some control. So don't make him have little walks or get out of the car if he doesn't want to or drink if he doesn't want to. His tiredness is related to his compromised breathing so let him sleep as much as he wants.

 I interpret it as don't try and save his life which is what I think I've been trying to do. Listen to him. Let him be. Make him comfortable. And don't compromise my health in the process.

The other thing she says is that there is increasing evidence that Fronto Temporal Dementia and MND are closely linked and a small percentage of people can live up to 10 years with it. It could be that Robin has had MND all along, from as early as 2007, when we first noticed a change in his vocabulary - that he felt he was losing it. When he lost a lot of weight. When he started to be tired all the time. And that's about 10 years ago.

Who knows. Anyway, in spite of all the good things that have come out of it - and they are actually blessings - it's still a rubbish life for both of us.Which won't go on forever. But I still find myself a weeping wreck, squatting on the kitchen floor late tonight after mopping up a spray of pee ....yet again......wondering how long, how long?