Thursday, 24 January 2013
In the Bleak Midwinter
He's housebound in the snowy weather but the snow will pass. Being unable to stand up from his riser/recliner chair makes him more of a prisoner. We're using the hoist now to transfer from riser/recliner to wheelchair. This means planning and more of a routine at bedtime, as he needs help to undress, take his tablets, go to the toilet and with fixing the pillows and bedcovers. He can't pull the covers up over himself any more. It also means earlier bedtime when I'm working the next day, which I don't like to impose on him, but is absolutely necessary to ensure I get enough sleep to function in work and at home. When he's settled, I get myself ready, lock up, make sure to batten down the hatches and go to bed. When I turn off my light, that's his cue to turn off his bedside light ( he uses the environmental controls for this) and start reading his kindle with its special light attached. I put on my eye mask and with any luck I'm asleep in minutes.
The arms are weaker and he's not using the rollator to move around downstairs as much - only a few steps into the bedroom now. We should have a visit from Medequip this week. We need the bed to be unfixed from the floor and moved so that there's enough room on his side for the hoist. Standing up from the bed is shortly going to be impossible for him. As it is, it's a huge struggle. Determined to keep our bed for as long as we can, it's been raised and fixed to the floor, a bed rail fitted on his side, sliding sheet provided for turning and once there's room for the hoist, I believe we've done all we can to stave off the inevitable.
Eating is a tiring business for him and although I cut up his food, when necessary (or Tom does), he won't permit feeding, even though I imagine the food gets cold on the plate sometimes and simply raising the fork to his mouth can be a struggle.
I've noticed that his voice sounds tired on occasion but it could be nothing - he can still talk, swallow, breath. We are ever watchful for signs of new deterioration.
The next sleep study is coming up. The last time was August 2011 - the night of the riots, in fact! It will be interesting to see if there has been a significant change in his breathing at night.
It gets harder to remain positive and impossible not to share with him a feeling that the walls are closing in on him, on us as the ruthless march of ALS continues and the insidious simian hold of the Monkey strengthens.
But then, January always sucks.