Grief is not far below the surface. I feel it rising sometimes. Missing People are developing a new website and some members of the Supporters and Communications Team gave a presentation at our (Services) Team meeting this week. One new initiative is the idea of the 'In Tribute' page. Families often want to make a donation in memory of their missing loved one and when the new website is active, they will be able to do this and post their dedication. There will also be a page where they can 'light a candle' in memory. If anyone had asked me to voice an opinion, I would not have been able to speak. Tears sprang to my eyes and I had to do the old eye widening, rapid blinking trick (good thing all eyes were on the woman doing her presentation!) combined with digging my nails into the palms of my hands for a time. Wouldn't recommend it, but it worked. Obviously the subject matter was emotive but it certainly sent a piercing reminder through me which took me by surprise. One day the monkey will no longer be on his back. The day will come when the fight will be over. Then it will be about tributes and candles for us. Someone once said to me that he thought perhaps I was in denial. I think it was because he saw me coping day to day and apparently unaffected. Believe me, I'm not in denial but I've got to get on with our lives. There will be a time and a place but it's not yet. Lots of living to do yet.

Dependency and the self righteous carer

He dropped his I-phone on Saturday night. He really loves that phone. Honestly, it has to be practically surgically removed every night. Anyway, something shifted in its innards and the SIM wouldn't work. So on Sunday, Roch prepared for a visit to the Orange shop in Richmond. In the past I wouldn't have dreamt of going with him. A phone shop, to report a fault, on a Sunday afternoon? I can think of a lot of places I'd rather be. I might have gone with him into Richmond, done some shopping and then met up with him after he had conducted his business. But on Sunday I didn't feel comfortable with him going alone. It is partly that he's slow and a bit shaky but it's more than that - he just seems more vulnerable to me now. He could probably have managed but I felt I should go with him. I asked him if he wanted me to come. He didn't say yes, but he didn't say no. He said "Come along if you like." I know it makes it easier, more comfortable for him, if he has company but I think maybe it's hard for him to come out and ask. He said he would be leaving in fifteen minutes, but after the fifteen minutes had passed he was busy, and when he was ready to leave, I wasn't because I had started to do something else (blog actually). So we we left later than he would have liked.

There were two assistants in the Orange shop, both busy with customers. We had to stand and the longer we stood, the harder it was for Roch. We had left the rollator in the car - he had his two sticks but we really should have thought to bring the rollator. (Not in the zone, Deirdre!) He wouldn't hear of me going to get it. As the minutes passed, I could see he was getting annoyed with the wait and I knew he was feeling frustrated and angry because he was realising that he wouldn't be able to stand for much longer. I pretended not to notice as he cursed under his breath (loud enough to be overheard), but I could feel myself tensing up when the swearing got worse. Well, I had to admit, it was annoying. I could understand his frustration. The two customers ahead of us were taking ages and at that point, nobody had even acknowledged our presence. I had asked him once or twice if he'd like me to ask for a chair - other people were also waiting and a number of customers had left, fed up with the long wait. Nobody else was sitting and there were no chairs to be seen. He was adamant that he didn't want a chair. I knew he didn't want to appear weak, or different or draw attention to himself. But I made the decision to ask anyway. So I did and he glared at me. The assistant brought a chair from the back and he sat down. We waited for a time again until eventually he was served and at that point I deemed it safe to leave him to it.

On the way home, he remarked on how ironic it was that because I had delayed him, he had been kept standing in the shop for so long. "If we'd been ten minutes earlier," he said, "We might have been there first." My first feeling was indignation, followed closely by a wave of self-righteousness. There I was, giving up a good part of my Sunday afternoon to stand with him in a bloody phone shop. Not only did I go with him, but through my intervention, he had been provided with a chair for part of the wait. Maybe he was right, maybe the delay had made a difference, but was there any need to say it out loud? Any need to make me feel bad? Well, yes, on reflection, he probably did feel a need to say it. Maybe (who knows?) he was punishing me a little for asking for the chair. Maybe saying it made him feel like he was more in control. Like nothing had changed and he hadn't really needed me at all. But you know what? I think I get where he's coming from. I had to think about it, but here's what I came up with. Okay, Roch's not someone who ever had to ask for help. Now he needs it more and more. When you rely on other people to help you carry out the tasks you need to do, you have to wait until they are ready to help and that's not always going to be when you want the thing done. I remember, as a teenager, when my mother wasn't well, she would ask us to do household chores. "In a minute," we'd say. We would do them, you didn't keep my mother waiting for long, but if we didn't do the thing immediately, soon we would hear the sound of the hoover or the clatter of dishes in the sink as she dragged herself out of bed to do thing herself. It never failed to irritate me because of course I was going to do it, and I usually did do it really quickly, but I get it now - she hated not being able to do it herself. Having to wait until we were ready really frustrated her.

So although Roch's remark annoyed me I think I see where he was coming from. Becoming dependent isn't easy for anyone but it's especially hard for Roch. He was always most comfortable in the role of helper. Gradually I'm beginning to realise the emotional and psychological challenges inherent in the role of carer. I don't want to be self-righteous. I'd like to be able to just do it. It's going to be a lot harder than I thought. Ambushed again.

One Art by Elizabeth Bishop

One Art by Elizabeth Bishop



The art of losing isn't hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster,

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn't hard to master.

Then practise losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.

I lost my mother's watch. And look! my last,
or next-to-last, of three beloved houses went.
The art of losing isn't hard to master.

I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn't a disaster.

-Even losing you (the joking voice, a gesture
I love) I shan't have lied. It's evident
the art of losing's not too hard to master
though it may look like (Write it!) a disaster.


(With thanks to Phil, who shared this one with me.)

Random musings and a mother's comfort

I asked Roch today if I am ever impatient with him now. He says, no more than I ever was. I'm glad about that. Yes, impatient wife - always was (how annoying he can be at times). I read an interview with Dianne Abbott MP in the Guardian today. I share her 'most unappealing habit' - wanting to win an argument. Mostly I just want to win every argument with Roch. I really hate it when he gets the better of me! That hasn't changed and I think that's a good thing. But I would never want him to feel I was impatient with him because now he is slower at so many things. I don't think I'm naturally patient, but it doesn't feel difficult to be patient with the limitations the monkey sets for him. I defy the monkey.

Why is it that the Licals trial tablets are so huge? I ask you, does it make sense that for a clinical trial for MND patients, the tablets are enormous, and difficult to swallow?

We had sirloin steak for dinner tonight - I was watching Roch to see if it was difficult for him to manage. He said no, no trouble swallowing (or cutting up the meat) but he did say that he's finding it more difficult to take the big tablets. I recently bought a pill crusher (ouch!) for the cat's worming tablet. I suggested we scald it and use it for the Licals tablets. "I am not a cat," he said indignantly. So much for that idea. Happily all the other tablets still go down ok. He does have to take quite a few. I'm relieved that swallowing them isn't causing a problem yet. We may need a pill crusher later.

So what does he take? Riluzole of course, quinine for the muscle cramps (still working at present dosage, occasional cramps experienced), ascorbic acid (concentrated Vitamin C), Vitamin E in suspension, Loperamide, lorazapam (for anxiety, but he hasn't taken it yet - originally prescribed for the night horrors - could this mean that he is actually taking lithium and it is keeping the horrors at bay?) We're told that for six months after his participation in the Lithium Trial ceases, he will actually be prescribed lithium. Well, that's fair. I wonder if it will make a difference to how he feels? I wonder if he's on lithium and it's slowing the monkey's progress? I wonder, I wonder.

He's not losing weight, although he does appear to me to be losing muscle mass. It's not very noticeable yet. Upper arms and legs are thinner. His ankles are delicate things.

So here I am, recording the changes I'm noticing on my blog and how am I feeling about it? Mostly I try not to think about what it all really means. My default position is sad. I am always sad. On the surface I can be anything you like - cheery, scratchy, snappy, businesslike, funny, calm, loving - but let me tell you I am always sad now. Do I ever forget about it? Sometimes in work when it's busy I am thinking about other things or if I am engrossed in a good book or a good film/drama I can be transported elsewhere for a time. Having said that, if I am very tired (I am often very tired) it is there even at work, like a moth constantly flapping around my face and I don't have the energy to wave it away. The flickering shadow makes me squint at the screen and my eyeballs ache.

Occasionally I am panic stricken at the thought of being without him. And I can't imagine a time when he will be unable to move or speak. There are times when I try to, you know, try it on for size? But I can't keep it up for long. I don't want to. I taste the loneliness and it's enough for me.

My mother is comforting. She says we never know what will happen. "You could die first," she tells me. "What would Roch do then?" I ask her. "Well, you wouldn't have to worry about it then, would you?" She says. A girl's best friend is her mum.

The Trip to Exeter and we visit the Country of Last Times

Well, we brought Kate back to Exeter on Sunday. Roch drove all the way there. He loves driving and says that when he's driving, he can almost forget the monkey on his back. He and I had a meal together before we left, at one of our favourite restaurants - Wagamama. I remembered the lesson learned from our last visit there, in September. Then we had taken a seat in the middle of one of their benches (not sure you all know the routine - but all patrons sit at long benches with their fellow diners). This meant we were pretty visible from all sides. Roch chose a Ramen (noodle) soup , and it was a difficult dining experience. His right hand started to protest and shake too much and although he switched to the left, it wasn't much better. Anxiety and embarrassment made the shaking worse. This time, although we were led to a similar position, I asked to be seated at the side, by a wall, just for more privacy, so he would feel more relaxed. It worked I think - much more enjoyable for both of us. Little things make a difference. I recalled a moment in the cafe at the Houses of Parliament, when I returned to our table with a coffee for Roch. He was seated with people from the MND Association. A little thing, but the cup was too full, and he couldn't lift it without spilling it. Very understanding spouse, I'm sure they thought. One of the ladies kindly emptied the cup a bit so he could manage. In my defence, it was early days and I just didn't think. I did feel pretty stupid though. Haven't made the same mistake twice. (By the way, the coffee there is indescribably bad).

Before we left Exeter on Sunday, I offered to drive but Roch felt he could do it. Well, I had come along in part to be the insurance if he didn't feel up to it but I confess I was relieved. I prefer it on long journeys when he drives and I know he does too. But ten miles out, he pulled over and asked me to drive. His right leg wasn't responding to command quickly enough. Driving conditions were filthy. Heavy rain and poor visibility meant it was important to have quick reactions and he wasn't confident he could do it. First time it's happened. He hasn't had a problem driving since. It's probable that the long drive down tired the muscles out. I guess there's a lesson there about pacing himself. But anyway, it wasn't a good feeling. I took over and drove home without incident but it was a difficult drive and I could understand why he felt it was best to hand over.

Roch talks about living in 'The Country of Last Times', and we joke about how frequently he thinks it's the last time, when he loses the power to carry out a task - and then next day or a few days later, he can do it again. On those occasions I remark that 'Here we are in The Country of Last Times - again,' and hope that we are granted another reprieve. Long may the driving last.

Guess Who's Coming to Dinner - Sidney Poitier

Here's a treat for you all. The Poitier scene in all its glory. Enjoy!! (See previous post for context).

My 'Poitier' moment

There is a scene in the film, 'Guess who's coming to dinner?' in which the father of the Sidney Poitier character attempts to dissuade him from marrying a white girl and ruining his life, throwing away his career as a doctor. He reminds him of the sacrifices made by his parents to put him through med school. His mother, he says, went without a decent coat to put the money towards his schooling. Poitier tells him 'I owe you nothing. You did what you were supposed to do.' It's a classic scene.

Although the context is entirely different, I had something of a Poitier moment over Christmas, and it occurred to me that the role of a partner who is also a carer has something in common with a parent's role - you could say we too do what we are supposed to do.

I'd like to share my thoughts on this with you and I'm going to try to be honest about it. I realised at some point during my festive preparations that I was feeling hurt, a bit resentful. I didn't recognise these feelings immediately - I just knew I felt a bit impatient with Roch at times - there I was rushing around 'doing' Christmas and little thanks I was getting, it seemed to me. Now, I need to be clear about this - in terms of the carer's role, we have not yet reached the stage where I need to assist Roch with dressing or washing. He may be slow, but he's determined to do as much as he can for himself, for as long as he can. Occasionally I've had to do stuff and I hope he would say that when called upon, I come up to the mark, willingly. No, I'm not talking about the tasks one usually associates with the carer's role - obviously there, we do what we are supposed to do - I am talking about the work I felt I did to create our Christmas. He didn't ask me to do the extras, he didn't expect me to pull out all the stops - but I took it upon myself to do so and hey I worked hard and it was all lovely. But I found myself feeling unappreciated by him. There came a moment when I had to stop and give myself a shake.

You know what?
I did what I was supposed to do. I stepped up. My husband has MND and he can't do all the things he used to do to help and I think now that made him feel sad. So I worked hard to make sure we all had a good Christmas - just how grateful did I expect him to be? Maybe I worked too hard at it. Maybe I worked so hard to make it 'perfect' I made it more difficult for him to cope with the contrast to other years, where we worked together to make sure we all had a good Christmas.

Isn't it funny how you get ambushed? I hope I would never feel resentful or expect heaps of praise from him for helping him to dress or wash or go to the toilet (remind me of this when the time comes folks) but I was taken by surprise at how hurt I felt - that he wasn't more appreciative of my efforts over Christmas.

Sidney - I owe you one. Roch, just the occasional bunch of flowers will do...

In which bums are mentioned...

He's stumbling backwards quite a bit more, it seems to me. He had an appointment today with his physio and occupational therapist at Richmond Neuro Rehab. The physio advised him to stand with his feet more apart, heel to instep for better balance. She also suggested a new way to go upstairs - the bum shuffle. It's not very dignified, but it's safer and uses less energy. He has yet to try it, but he's willing to give it a go, if it gives him more time upstairs.

The lovely and efficient Rachel (The Council's OT) will be here on Tuesday with the 'Bio bidet' man, so it won't be long until Roch will be issuing invitations to all and sundry to try it out. Well, take note, I will be handing out Domestos and a toilet brush. All guests do their own cleaning. It's only fair, the bio bidet cleans your bum, you bums clean our toilet!

He's not losing weight, which is great. Appetite still good and no problems with eating or drinking (another thing Professor Al Chalabi was pleased about). I think he's in better form than he was over Christmas - he's making plans and getting himself organised. I was thinking I would have to get going on Disabled membership at the Arsenal, which is something he was very reluctant to arrange for himself last year. However, he's gone ahead and made the first moves so hopefully they'll have something in place for the Wigan game in a few weeks' time. He doesn't like it when other people arrange things for him. He prefers to do things for himself so I'm really pleased he's got that act together. Looks like he'll have a few years left at the Emirates.

I am also looking forward, making plans - another trip to the Canaries? Other treats have suggested themselves to me but I wouldn't like to give anything away too early. Roch you'll have to wait and see...

The SatNav and the Professor

And so it came to pass that the days of public transport to King's College Hospital were no more...the time of the SatNav had come.
In fact, the height of the step into the train has become too much for Roch. We used to drive to the station and catch a South West train to Waterloo, walk across the concourse out to a bus stop and catch a bus the rest of the way to Denmark Hill. At first it worked out ok and it felt good to Roch to accomplish the journey but it's too much now.

Anyway, there's always a way around these things and so we got a SatNav which is incredibly simple to use. Andrew, Roch's MND research nurse, who is monitoring him for the Licals trial (clinical trial for Lithium Carbonate), arranged a really handy parking space for us for the day, and off we went. It was pouring with rain last Thursday and we set off in some trepidation. Roch drove and I think we only took two wrong turns, so we did well. More importantly, we both kept our cool at the hairier moments -it takes a while to get used to Mrs. SatNav's instructions but we soon found out that the word 'Recalculating' was not a good sign.

In a funny way, we look forward to our meetings with Professor Al Chalabi. A feeling of relief flooded me and I felt close to tears as he greeted us. He is interested, engaged and his expertise and the depth of his knowledge bring great comfort. He was really pleased with Roch and happy to have his prognosis confirmed thus far. He feels that the disease is progressing slowly and this is what he predicted, given the way Roch's symptoms presented. This is all good news, but it's hard for Roch to feel happy and grateful about it. He has lost so much already and life has become so much more limited for him. It doesn't matter that compared to most of Professor Al Chalabi's patients (most die within two years, some on their first visit have much more severe symptoms than Roch has now) he's doing so well. It doesn't feel like he's doing too well, to him.

I did feel cheered by the visit. For me, the news means Roch will almost certainly be around for longer than we had thought and that has to be a good thing. Of course, this also poses a very important question for Roch - for how much of that time will he enjoy a good quality of life? This is a question even Professor Al Chalabi cannot answer.

I was listening to of all things - a 'happiness expert' on the radio the other day. For a fee, she will fix your life so that you can be happy and reach your goals! She said the first thing we need for happiness is certainty and I couldn't help thinking about our situation. Well, there's one thing we're certain of, but then that's a certainty present for every living being. We don't know quite how we'll arrive there, but we have a better idea than your average healthy Joe. However, we're lucky I guess, because the second thing we need, according to our 'happiness expert', is uncertainty. Well, there's plenty of that.

Post Christmas reflections or Christmas cookies and holiday hearts

We had a good Christmas. I don't know how many we have left together and this year it did feel different. I don't think Roch was able to enjoy it the way he has in the past. It was hard for him to enter into the spirit of it. Well, I don't blame him, but there were times when it felt a bit lonely. Not because he couldn't help but because I sometimes felt I couldn't share my pleasure in the little Christmassy things. It was hard for him. He wasn't able to help with the preparations or shopping and although he had intended to do some internet shopping in advance, he never got round to it so I think he felt like he hadn't made enough of a contribution and that cast him down. I went into overdrive to make up for it, to produce the 'Christmas package'. Not that I didn't enjoy it. I love Christmas and I love making it happen in our home. I'm good at it. This year saw the production of a Christmas cake, mince pies and Christmas spiced biscuits in honour of the new oven. I really loved the baking and what could match the proud moment when Tom told me that my baking had made Christmas for him? I enjoyed every moment of the preparations and I think I pulled it off for both the kids.
Of course it did mean that I was utterly exhausted at the end of it and so between Christmas and New Year I felt so rotten that I had to cancel my various arrangements to meet up with friends on the days Roch was in work. I should know better.
Roch will tell you that I often have a tendency to overdo things at times, trying to achieve some notion of perfection. In recent years I had hoped I was more relaxed, but this Christmas I outdid myself. So what was going on?
Simple really, the more I did, the more tasks and goals I set myself, the less time I had to think. What will next Christmas be like? How many more will there be? The less time I had to feel the sadness. Because a sort of patina of sadness overlay everything for me and I know it was the same for Roch. Christmas is a time to be joyful, a time to give praise and thanks and after Christmas Day Mass, the kids and I agreed that it felt difficult to do that this year. Roch came to Mass the next day with me, as he wasn't well enough to come with us on Christmas Day. He said the same thing. It was bitterly cold, the Feast of the Holy Family, and afterwards he told me that he found walking from the car to the Church depressingly difficult.
There were many lovely moments together, like our Christmas Eve viewing of 'It's a Wonderful Life', which is our tradition now. I am acutely aware that I am storing memories - and perhaps that's a gift in itself. Treasure the moments.
Roch and I shared a lovely New Year's Eve - the kids were out for the first New Year ever and although I worked the day, we went out for a relaxed meal together in the early evening and then home to an uninterrupted DVD viewing of the disaster movie 2012. I think we both felt a disaster movie was the perfect choice for us to ring in the New Year. As the world as we know it literally fell to pieces before our eyes, I had a strange feeling of deja vu. After midnight, we joined some neighbours in the street for champagne. That was lovely.
So Christmas is over and boxed up and put away and here we are in 2011. We've made it and we still have some Christmas cake left.

Tomorrow: The Sat Nav and the Professor...

'Nobody Knows'

Recently, a friend of Roch's read my entire blog at one sitting. He told Roch that it made him feel guilty because he had had no idea things had been so tough for us. First of all, thank you so much for reading my blog - I was touched and delighted that you stuck with it to the last post and secondly -please don't feel guilty. We don't talk to our friends about how tough it is. We want people to enjoy our company! To illustrate my point, I want to share a little story with you...
There was once a woman who had had a very sad life. She herself was always keen to share her experiences with anyone who would listen. At first kindly friends and neighbours meeting this woman in the street would ask her how she was. The woman's answer always began in the same way 'Nobody knows,' she would say, 'Nobody knows how I suffer,' and she would commence a litany of complaints and moans -until the time came when people crossed the street to avoid her and she was known throughout the neighbourhood as 'Nobody knows'. That, my friends, is a true story.
The point? Well, that woman may have had a hard life and she may have felt she had a right to moan and complain, but her friends and neighbours got sick of hearing about it, and I don't blame them. Who wants doom and gloom all the time?
Roch and I don't want to be the new 'Nobody knows'. Sure, sometimes we're down and we might have a bit of a rant in private. Tears have been shed but we still know how to enjoy ourselves and have a laugh. We're not going to visit our woes on the unwary well wisher. I try to make this blog as honest as I can. So if you want to know the latest, and you want to see how we are, have a read here, I promise I'll update it more frequently (now there's a New Year Resolution for you).
Gerry, thanks for stopping by, hope to see you again sometime.