Friday 16 January 2015

No.141. Getting on with it.

This week hasn't been an easy week, with other family things happening, but life says, 'Get on with it' so we do, well we have to don't we?.

The palliative care nurse came for her monthly visit. She mentioned a medication that Chris could have that can relax the airways if you choke. Neither of us were sure about it, but we'll see what she says next time as apparently she gets together with the GP and others to discuss things like that.

I also sent off a mouth swab for Chris and it turned out he does have oral thrush. He has been able to eat a bit of fresh pineapple at breakfast and hopefully that will help along with the medication.

I have been putting a milkshake down Chris's PEG at lunchtime as he rarely fancies very much lately and it saves a lot of time for him. I discovered though that it is best not to accidentally squirt it everywhere prior to putting it down the PEG. These shakes are exceedingly sticky and I managed to squirt it all over the days business post. They can give superglue a run for it's money as I had to prize the envelopes apart! I think I'll try and be more careful next time.

We had to go and get a new suit for Chris today as none of his suits fit any more. The irony is that people generally lose weight with MND, but I was told to feed him up and I did, but any weight he has gained seems to have gone solely round the middle, so none of his suit trousers fit. We ended up getting a new suit in Next. The staff were very helpful after I asked if I could bring a suit downstairs as the men's department was up stairs and there was a sign saying 'Out of order' by the lift. It turned out the lift wasn't out of order, someone forgot to move the sign, so we were able to go upstairs after all. I have to say the changing area was brilliant. They had a really large disabled changing room with a seat and support handles and it worked really well to help Chris try the suit on as he is unable to stand unsupported now. Chris usually puts his hands on my shoulders, one time where me being short comes in handy and I pull up and do up his trousers and tuck in his shirt, I rather think he enjoys me doing that sometimes, ha,ha, well it puts a smile on his face anyway. Oh life's little pleasures. Thankfully the suit he chose fitted, so that was a successful trip out.

Chris's speech has deteriorated a little more I think. I suppose there is deterioration throughout the body, but the speech is the most obvious. There hasn't been anymore choking attacks since the last one. I think being careful with what Chris eats helps and he has been extra careful with his drinks. He did try the Rescouce thickener, but he wasn't keen. I think he would rather I put the fluid down the PEG than use that. Life is so unfair, but Chris just takes it on the chin, like he always does. I don't know how he does it, I know I wouldn't and don't.