Chris's sister stayed last night, it always cheers Chris up when she is here, after his second dose of Oromorph though he was totally zonked out for most of the day. The hoist turned up in the morning and in the afternoon Chris needed the loo, so Tracey came over to show me how to use it. Talk about a learning curve, I can see why you have to have two people to use it and for the life of me I cannot see how you pull pants and trousers up and down while using it. After he had finished on the loo it was around 5pm and we thought it best to get him into bed as it would save him getting hoisted around again later. Getting him into bed worked OK and we had raised the bed earlier with some feet raisers. The physio also left out a slider sheet for us to collect and that helped a bit, though that wasn't with out it's problems, because Chris has to be put into bed sitting up and he nearly slid off the end of the bed, like I said, a steep learning curve!. I am certainly going to think of a way to preserve his dignity though, because being hoisted around with your trousers down is somewhat exposing!!
However I was beginning to see quite clearly how much easier things would be with a hospital bed. We have a very large and spacious lounge and I have managed to persuade Chris to have a hospital bed put in there. Our bed is two single beds put together so we could also put my bed down there. That way he could see me getting on with stuff in the kitchen etc and I could keep an eye on him easier. The bed would also have a specialist mattress to help with pressure relief, so I will phone Angela on Monday and see if she can get one organised. Of course Chris could still get up and use his wheelchair if he wanted. The changes the past week alone are hard for both of us to get our heads around.
I also had a honest chat with Chloe today. I explained that her dad's MND was progressing quite fast at the moment and if it continued at this rate then there was a possibily that we could lose him sooner than we hoped. I also said though that the progression could plateau for a while and could slow things down for a bit, we just didn't know. She understood what I was trying to say. I have always been honest with our kids, I did not want to keep her in the dark about things, she said when she comes home next week that she wanted to help me with his everyday care, I said of course, he would love that. There have been so many tough conversations this week.
Tracy, Chris's MND nurse phoned today for her telephone consultation. She was helpful as always and we talked things through. She talked a bit more about how the end might be and how most people just go to sleep and don't wake up, that was reassuring in a weird kind of way, she discussed with us other stuff relating to that too. I feel quite numb about it all really.
Caring for some one this dependent is a full time job. The carers have still not been sorted and I am so relieved I have family to help. It is tiring, it is all consuming, but I don't begrudge a minute of it caring for my darling boy. He rarely complains or moans which is amazing as he is so dependent on me and can do so little now. These days he has simple pleasures and they are mainly watching his favourite TV programmes, that is when he isn't sleeping.
We have decided that Chris is only going to have Oromorph first thing in the morning and last thing at night, there doesn't seem much point in him sleeping all day because of it.
I haven't felt like cooking for myself so Jordan and Tracey went to get some fish and chips for me and we ate them together. We had to sit in the dining room and leave Chris in the bedroom as the smells make him feel sick. It did give me a chance to catch my breath though and when I went back into Chris he had nodded off again.
Oh well, bed time routine now and then a welcome sleep beckons.
