Thursday, 9 April 2015

No.168. We move on, MND does too.

MND has taken many things from Chris and us and one of those is our home. As much as we are grateful to have this lovely bungalow to move in to, it has still been hard, especially for Chris. I am sure we will adapt and settle, but I had quite a soft spot for our old house too. I had lived there 20 years, Chris the whole of his 57. We had a lot of happy times there. I suppose what made this move tougher was the reason behind it... MND. It has stolen many physical things from him, but it has also stolen his profession, his farm, his ability to ride his horse or drive his car and ultimately his home.

Moving from a larger house to a smaller one has also meant leaving some stuff behind. We were spoit living in the farm house, the more space you have for more things you fill it with. Chris has found it the hardest to leave things behind, in fact most of the stuff he has hoarded he has brought over, but ultimately those things are just that, things. Our memories, our family and our personal possessions, they are the important things.

Everything has more of less been moved over now, well the stuff we need anyway and I am slowly sorting everything out. The kitchen floor has been laid, Sky reinstalled and after a few hiccups the phone and broadband were back on line. Even the dogs seem to have settled after their initial reservations.

While moving I managed to get in touch with Chris's GP and ask to have his medication in liquid form so that they can go down his PEG. Putting diluted crushed tablets down the tube isn't ideal. I also managed to get hold of his dietician and after discussion with us have decided for Chris to also have a pump feed during the day via a backpack. This will give him all the nutririon he needs, but enable him to get on with his daily life without too much interruption.

There are many cruel things about MND, but not being able to eat is one of the cruellist . It is one of life's pleasures and although Chris has little appetite these days he said he woke dreaming of food last night, it is oh so very sad.

Chris has also started to get quite out of breath if he lays flat in bed, so now sleeps with lots of pillows to prop him up. That will be something we will discuss with the palliative care nurse when she comes to visit next week.

So ... Life moves on and we have moved to a new home, but so does the MND move on, endlessly progressing, always relentless. Nothing it seems, will halt it.