Cars and the Monkey or 'Every Which way but the way you want it to be'

Well, we've got the Sky guy in today. He was supposed to come between 8am-1pm but he didn't show up until 3pm. Cable everywhere as of course the new downstairs arrangements mean the main TV will be wall mounted in the central part of the house. The dish isn't too bad, but it's right outside the front door, so not exactly discreet. We'll have Sky in the new downstairs bedroom, too. Gradually things are getting organised now. We are waiting for the new sofa and a proper chair for Roch - I have to think carefully about where to arrange the new furniture so that there's plenty of room for turning in the wheelchair.



When I got home yesterday from evening Mass I had forgotten my keys - so I rang the doorbell and lo and behold (!) a man in a wheelchair rolled his way down the hall to greet me and open the door. Roch is practising. I felt so proud of him - and he felt good about himself, too. That's so Roch, once he makes up his mind to do it, he does it. So we're busy making sure everything he needs is within reach in the kitchen (he can still use the corkscrew and bottle openers himself (check) - all booze within reach (check), coffee machine (check). We have to get the priorities right.



He is having difficulty facing work in a wheelchair. Actually, Roch in a wheelchair loses none of the power of his personality and I use the word power deliberately. He has yet to realise this. He may be sitting down, but he still manages to tower over the rest of us.



He can't lift the chair in and out of the car himself and so we have to think around this. There's always 'Access to Work' - they already bring him in and back once a week. I can bring him in and pick him up some days, too. This week will be his first working at home for two days, instead of one. From now on, he will be home on Tuesdays and Thursdays. It'll give him a chance to rest a bit in between the days he makes the journey.



For the first time, he used the rollator when he was alone. He told me that he sat in the car for ten minutes beforehand, psyching himself up. He can still get it in and out of the car by himself. He really hates using it. But I think it is safer now than the sticks. Driving home, the monkey struck again. Roch's right leg played up. It wouldn't respond to commands and he's lucky he had enough control to drive (very very slowly, he said) up our road and park. Thank God he was almost home. Now this is the second time he's had a problem driving. He drove later in the day and had no problem at all. You may recall that the first time this happened was when we were coming back from Exeter, and we assumed it was muscle fatigue. Yesterday we speculated that it was the cold, as he had been sitting outside a cafe on the High Street for ages, he said. Giving each other false reassurance? Is this the first indication that driving will be the next thing the monkey takes away?

Strolling and rolling

He's been off work for the past few days. Something is changing, he tells me. Last week, he fell twice. On both occasions, he fell backwards. The first time was at home, outside the back door, but the second time he fell backwards on his way into a pub (yes, you read that right - on his way 'into' the pub). Happily, he was with friends. His bottom, back and head hit the pavement but although he was very shaken and a bit bruised, there were no serious physical consequences. It worries me that he may fall again - he's shaky on his legs, standing still is very difficult. He fell even though he was using both sticks.


He says that since the second fall, he feels as if he is entering a transition period. Something is changing in his body and psychologically, he has to adust. He's not sure if the strength he has lost will return for a time, as it has before. That he is losing strength in his legs is certain. He is also losing confidence. He didn't go out much over the weekend. The other night in bed, he turned to me in the darkness and said 'I'm afraid to go out.'


He is battling against the wheelchair. He has a point. 'If you don't use it, you lose it,' he says. But safety is important and if he 'uses it', falls and injures himself, he might never stand up again after he recovers. So where do we go from here?


I don't want to nag him into using the wheelchair - God knows, I don't want to rush him into it. Everyone says he has to come to it himself. Yes, but he's so stubborn and let's face it, he's not always right.


So - it was a gorgeous day today and I suggested a walk down to the High Street. I need to get used to pushing the chair and there is no way around it. He will need to get used to this. So we did it. Our neighbour, Christian, came with us. There's a lot to think about when you're pushing the chair. I tried not to go too slowly or too fast. I never realised the pavements were so uneven and bumpy! You have to watch for low branches sticking out from hedges. I found it a challenge when the pavement sloped on one side or the other. I think I did okay. I was lucky - Christian was the one pushing when Roch was smoking a cigar so he got the smoke blowing back in his face!

How did Roch feel? It's losing his independence, losing his power. He says he feels diminished as a person. He knows this isn't so but he can't help feeling like this. I feel for him. But it will give us more freedom to do things together. For instance, we can go back to Kew now. He can't walk round himself anymore. He used to love Kew. Maybe it would be too sad for him to go back to Kew. I know it won't be the same, and I can't hope to understand the depth of his sense of loss, but it's not over yet. He's right, we are entering a different phase, a significant phase. I know it's different for him. But for me, it's not the worst thing I'll have to face.

I'm proud of us today.

Premium seats at the Odeon

We went to see 'The King's Speech' today at the Richmond Odeon. Looking at their website, the word 'Accessible' was written above the showing times. I stupidly assumed that this meant the film was showing in the accessible cinema theatre. Such a popular film, I thought, and recently released, of course it would be showing in a cinema accessible to all. There was no obvious number to check this out, just the number for ticket booking. I didn't think it through. We parked not far away, which was good. I went ahead to buy the tickets. We were there for the 2.45pm showing. Before I bought the tickets, I checked about accessibility, explaining that my husband had mobility problems and found it difficult to manage steps and was told that this showing was up four flights of stairs and there was no lift. I asked about the next showing and was told that that would be better, although it was in the cinema round the corner. Ok I said, that one's downstairs then? No, she said, it's upstairs. Well then! What about the next showing? Oh that one's downstairs but it's at 6pm.

In the end, I checked with Roch and he said he would prefer to go to the afternoon showing, now we'd parked etc. I'm sure he was doing it for me, too. He knew I had been wanting to see the film for a while. I had that familiar sinking feeling as he made his slow, painful way up the four flights of stairs. At the last step, I had to really work hard to help him to the top. He rested awhile in a seat near the door. All the time I was thinking - 'Am I helping him by giving in? Should I be insisting that he stop doing these things, pushing himself?' He was exhausted by the time we got into the cinema - standing was a problem and I couldn't find our designated seats quickly enough so I just waved him into the nearest aisle seat. Only then I noticed we were sitting in Premium seats, which we hadn't paid for! Plenty of legspace for Roch! The cinema was practically deserted and it didn't take long to convince myself that the Odeon people wouldn't mind. Actually I didn't much care whether they did or not. I felt Roch deserved the seat after all the trouble getting there.

So now I have two telephone numbers so I can check out the accessibility of different showing times, in both cinemas. So that's something. No more stairs.

By the way, brilliant film. Colin Firth should really get the Oscar.

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.