Ladies who lunch

On Monday, I had lunch with a fellow MND wife. It's been some time since we met up and she was struck by how well Roch is doing, how slow his rate of deterioration compared to her husband's faster decline. This gave Roch and me food for thought. I was shocked to hear how her husband's condition has worsened in a relatively short space of time.  I  am so glad we met up but it's impossible not to feel close to overwhelmed by the vision of the future that she presented to me. It's best not to look too far ahead, perhaps. I am so grateful that Roch and I have been granted time to adjust to the changes, the losses. They have not been so lucky. A question I think many MND Carers must ask themselves is "Have we reached the 'messy' part yet?"  I completely related to her when my luncheon companion expressed this thought. She thinks they have. I think we are not there yet.
Over our cosy pub lunch, by a roaring fire she and I covered many MND topics. PEG feeding, nose twizzling, cold feet and venting; frozen shoulders, back strain, dry skin and grieving. We talked about our shared experiences, the many frustrations in our daily lives as Carers - we puzzled over how to resolve our feelings as wives/partners thrust into the roles of nurse, carer, babysitter, the constant demands on your time and what it does to your relationship. We talked about our children and how to resolve the conflict of prioritising their needs. We talked about what we needed to survive and how to go about getting it.

When Roch was diagnosed, a good friend said to me "It hasn't started for you yet." I was angry - of course it has started I thought, as I saw all my hopes and dreams for our future together come crashing down around my ears. But I know what she meant. I think I did even then. She meant, we haven't reached the 'messy' part. When he can't speak or move at all, when you have to do absolutely everything for him. When he quite literally can't lift  a finger. We are still on our way, but we haven't got there yet. Meeting my fellow MND wife made me realise that. We are lucky.
We haven't reached the 'messy' part.
So, January still sucks but it could be a whole lot worse.

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.

Now, Voyager (and I don't mean Star Trek)

My loyal Blog-followers, let me reassure you that Roch is well and our MND voyage of discovery continues. My absence from Blog-land has really been more about a feeling of inertia on my part.  It has been incredibly difficult to get into the right mindset. I don't even know what that is! Following some kind of nasty virus mid-December I seem to have struggled to reach my former energy levels and still a kind of grey tiredness - most consistent with this dreary time of year - envelopes me. However, I will not neglect you any longer and I am pleased to say that I have received some requests for an update - I cannot disappoint.

There have been some changes of late. We are finding that the riser/recliner chair no longer serves to raise Roch from a seated position to a standing posture. I think it's because his arms have lost some strength lately, so he is spending more time in his motorised wheelchair, because he can manage to raise himself from this more easily.  At some point every evening, he may transfer to the chair, but if he wishes to leave the chair for any reason, we have to use the standing hoist. Tom and I can manage between us, without the hoist, but my back acts up sometimes so really, it's more sensible to use the hoist. If it's just Roch and me, and he needs to pee, then sometimes I just produce the Lenor bottle and he doesn't have to stand at all! We have that down to a fine art.

One thing he has been concerned about is the fact that he is experiencing some facial twitching. It's not something I've noticed, but he feels it happening quite frequently. We emailed Professor Al-Chalabi, who says it could be the motor neurones in the face, but could equally be down to stress/tiredness. So we'll have to wait and see.
He can still zoom in the chair over to the back door, stand up by himself and smoke a cigar on the raised platform outside - although lighting it himself can be a problem - so we often enact a kind of tender Paul Henreid/Bette Davis scene (although I only light one cigar) in the kitchen of  a morning.

The PAs are working out okay, although I have to say working with Roch it's a bit like Laurel and Hardy at times (not sure who's who - sorry guys). In all the essentials, they are working out well and we are grateful.
Roch has been to several football matches, which is a great achievement, mostly Brentford, but last weekend he went to a QPR match with best friend of old (and our Best Man) Seosaimh O'B , and one of Roch's PA's, Christian, who is a great QPR fan. I believe it was a terrible match, but they had a good time all the same.
Seosaimh was visiting for a few days and of course Kate has been home these past few weeks for Christmas and New Year, and last Friday we all headed off to see The Hobbit, at the Odeon in Kingston, then went for pizza. It was a great day and really, I am getting so used to doing all these things with Roch in the wheelchair that it hardly impacts at all. His right arm is much weaker now and the left is not much better, but he is still able to eat by himself, I just have to cut up his food more often now.

So how did we get over the Christmas, as they say at home? Well, it wasn't plain sailing this year, for me. I felt it was more of a struggle, although it began well, with the annual Christmas party. All his brothers and sisters were there. My brother and sister came (as always, Maura comes a few days in advance to help out with preparations). One of Roch's brothers told me he thought it went more smoothly than other years. I think that's probably true - it was less chaotic I think because fewer people came (although there were at least 50 here) but also because I have it down to a fine art now. There didn't seem to be as much to do! Lots of friends and neighbours came - to quote a certain Wizard, it was "Quite a merry gathering."

It was after the party that things started to go downhill for me - I went down with some mystery virus the following week, dragged myself into work for a shift, then came home and took to my bed. Naturally I kindly passed this on to Roch, which meant that no sooner was the worst of it over for me, than Roch was feeling dreadful. So it felt like a real struggle coming up to Christmas. Thanks to helpful neighbours, internet shopping and with the assistance of Kate and Tom, we managed to arrive at Christmas Day pretty well prepared, although still somewhat under the weather. I have a terrible tendency to do too much too soon so that probably didn't help.

This is the first year that Roch sat in his wheelchair with a tray (which is how he usually eats his meals at home) beside, rather than at his place at the dinner table for the Christmas feast. So that felt a little bit different, but thank God he was able to enjoy his food and have a drink with us.
We were a bit dubious about leaving him on Christmas morning, to go to Christmas Day Mass, but he assured us he would be fine, so we left him in his wheelchair with his I-pad, sending Christmas messages to all and sundry. I had my phone on mute in case he called. He promised me that he wouldn't get out of the chair while we were gone. When we got back, it was pancakes and buck's fizz all round - then the present opening began.

I really had to think hard about presents for Roch - he has an I-pad, a Kindle (he can't hold books anymore), a coffee machine, a telescope! I went for practicality and struck gold with two of my presents which he is using all the time now.
The first is a shower radio - showering can take a while, and I'm really pleased that he enjoys being able to listen to his favourite radio station every morning  while the washing process is taking place.
The second is a footwarmer with a removeable fleece lining and 6 temperature settings! The feet go in every evening and his feet are warmed right up, past the ankle. I've heard other MND Carers say that the people they look after have this problem - Roch finds this really effective. It helps that he can control the settings himself.
The best thing about these gifts is the fact that they weren't expensive - a fact which Roch really appreciates as he's a great man for a bargain!

 I just love Christmas. This is the fourth Christmas since diagnosis and we have been so lucky. Neither of us expected to make it this far with him so well. Every year brings changes and we are all adapting to these. I try to create a Christmas that's not so different from the years before MND and I know that will get harder to achieve. Celebrating together is the thing, I guess - all the rest is incidental, really. "Don't let's ask for the moon. We have the stars."

Don't they say that New Year Resolutions are made to be broken? In that case, I won't make a resolution to Blog more frequently. I'll just do it. 

Alistair Banks

I was saddened by news of the death of Alistair Banks, who was living with MND. His was the face of the MND Association's Incurable Optimism campaign from 2011. I had the pleasure of meeting him only once, at a Reception in Westminster to mark the exhibition of paintings created by another Incurable Optimist, Patrick Joyce. www.patricktheoptimist.org/

Alistair was 40 and was diagnosed three years ago. He was married, with two young children.  A talented musician, he wrote and recorded an album before MND stopped him from making music. 

Our thoughts are with his wife and family.


http://www.youtube.com/watch?v=bqbnU5lPP_Y&feature=youtube_gdata_player