I swapped the recliner for the larger of our two sofas and I managed to sleep better. Because the hospital bed will raise up and down we can match it to the sofa height and I push it next to the bed when I go to sleep. It means Chris can still hold my hand, which is more security for him than anything as he shakes it to wake me up if he needs anything. I think my clambering onto the sofa and out again has proved a source of entainment for him at least.
When Chris sleeps during the day now he tilts the chair back to support his neck and puts his legs on his bed and then into his pressure boots, his heels were getting worryingly sore just resting on the wheelchair foot rests. I have been a little worried about his bottom, so we added a Memeaflex pad that he had for his manual wheelchair. Many people experienced with MND have said to me he should have an air mattress and the carers felts so too as he is spending so many more hours in bed now.
The district nurses, by their own admission, are not very good at getting back to you when messages are left. I did phone them yesterday about Chris having an air mattress, but heard nothing. Now bearing in mind that they have popped in a few times to see Chris for a couple of minutes each time. Only once about 3 weeks ago did any of them check his pressure areas. They seem to trust me to tell them all is OK. The physio phoned while the carers were here to ask how the new hoist sling was, I said that it hadn't arrived yet, but the carers had managed to borrowed one till it arrives. The carer spoke to her and then went on to say that Chris needed an air bed too. They have said they can see a difference in Chris in just the week that they have been visiting him. A while later the physio phoned to say that the district nurses said Chris didn't need an air bed yet, but they would order one anyway, it will be here next week. Now that annoyed me somewhat as they hardly see him and aren't really in a position to say whether or not he needs one now. The way his MND has progressed this past month, it is hard for me to keep up let alone those who see him very briefly. The carers were a little peeved too and to be fair I trust their judgment as they care for Chris for a couple of hours a day and see hands on what his needs are. The new mattress is on order so I guess that is the main thing. I am not sure the district nurses realise how quickly this disease can change. I know they probably have little experience of MND too, but that is beside the point.
Chris seems to sleep most of the day now, though he does perk up a bit if people visit. The morning seems to be taken up with the carers as they don't come till around 10.30am, he is worn out after that. He never was a chatty man and certainly not about his feelings. Whenever I ask him how he is he just says OK, even though of course he isn't. I guess he isn't going to change the man he is just because he has this horrible disease. I can see how fed up he is though. The tears fall more frequently for me these days, not for myself, but for Chris. It is the cruelest thing what this disease is doing to him, cruel beyond belief. I feel sometimes he is losing the will and fight to live and who could blame him?
He needed the fan on him to help him breathe last night. Everyday he seems a little bit worse. He is just exhausted by it all. Everything, especially being hoisted around and especially by me when I have to do it on my own, tires him. I never considered Chris to be a big man, but even his legs seem really heavy when I have to lift them, because they are a dead weight now.
Oh and the new hoist sling? That never turned up.
I can't let myself think too far ahead because the future is a scary place.
