In New York

In New York

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.


  1. I'm going to get my husband to read your blog Deirdre. I find it helpful for me to understand what it's like for the carer- the burden you have to shoulder whilst the patient is in the throes of this godawful disease. I read about how the MND is marching relentlessly on for Roch; it mirrors my own journey, though I am further down the road. Hopefully any little titbits I can offer are helpful.Things do seem to plateau for a short while once the body has reached another point of no return. Though this is certainly no silver lining. Though my husband and I are often at loggerheads you make me realise what a thankless task you have and that I should be more appreciative o the sacrifices he has to make. Thank you. Keep well

  2. Hi Deidre, almost every word you write about Roch you could be writing about my husband Jim,he is at a similar stage with ALS/MND.He will be 55 in april and had no choice but to accept an early medical retirment. I have taken a career break to be his carer but this is getting harder and more heartbreaking as time marches on. Jim was diagnosed in aug 2011 and he has been outstandingly brave, unlike me , I feel like I'm falling apart, I had seven weeks off work after the diagnosis with a breakdown, we have been married 24 years and together 29 years. I just cant get my head round it but i've just got better at hiding it.

    my very best wishes to you and Roch and your family.