It's been a long day. Early shift at work and my - was it busy. 7.30am-1.45pm straight, lots of calls, lots of stuff coming in - then a short lunch break to leave at 3.00pm, so that I could go with Roch to the local MND Branch meeting (West London and Middlesex Branch). We were late so the presentation by Nicola (physiotherapist of Ealing ENable Team http://ltc.ealingenable.co.uk/ ) had begun by the time I wheeled him in. First time he arrived on wheels. Last meeting he had the rollator so got in under his own steam.
Now I'm beginning to recognise faces. Today there were some new faces (not least of all the one small, very new face of our Branch Contact's adorable new baby, K - his first branch meeting).
Meeting a new patient and his wife has made me reflect on where we are now, made me think about my first meeting and how far we've come since then. I think there's an element of surprise for some people when they ask when Roch was diagnosed, because it's almost two years now, and he's still looking good. So many people have lost their loved ones so quickly, the illness can progress so fast that there isn't enough time to adjust to each change before the next is upon them. This is why it's not good enough when services are not joined up, or not efficient enough, when calls are not returned and equipment not provided on time. It's not good enough if a carer has to say - "Too late now, we don't need that any more, that time is past and we've had to do without. Now we need something else." It's good to know the Branch can help when people have problems like that. But we've been lucky, we haven't (so far) been ambushed by change and one thing the monkey has done is given us time to plan.
Meeting new members I see their courage, their anger, their fear. I recognise it - I would never say I know what they're going through, because of course I don't, everyone is different, every situation is different, but with a sorrowful pang (for them and for us) I recognise us in them. We are the ones that bit further along the road now, we're not the newbies any more. In a way I'm glad we're not the new kids on the block but I'm also sad because these last two years have passed quickly. We've managed to keep things fairly normal, we've travelled a bit, we've made the adjustments to the house. We've done well and we've been lucky. It's been possible to keep things fairly normal because changes have been gradual. But it's over now and the road is beginning to get rockier.
I looked at Roch at the meeting today and asked myself, what has changed for us? In fact, so much has changed. There's been a gradual shift within our relationship as he has become more dependent on me. He was usually the one who took charge, did the leg work, looked after me - although I flatter myself that there was a bit of 'the power behind the throne' going on! Physically he was always stronger than me, fatigue was me having to rest whilst Roch took over, never the other way around. He was happy for it to be like that. Roch was always on the move, seeking tasks, filled with a restless energy. Now I must be the 'doer'. Roch worries about that, because I do get tired. He told me recently that two years ago he was afraid I wouldn't be able to cope (which, by the way, thanks for that!) and is proud of the way I have managed. But it does affect the way he views himself. It's hard for him because he feels less in control. He's clinging on to every vestige of independence left to him (and he is not helpless yet) but we can both feel it slipping away.
Back from the meeting I had time to prepare a meal for the three of us and then drove Roch to the local pub through the pouring rain to meet a good friend for a few pints. Then back again two hours later to pick him up. I was worried about him making his way from the door to the car in the rain (he was using his sticks) and Tom came with me, to be at his side on the way out. In the past he would have walked home, rain or no rain. Now he has to ask me to bring him and collect him and be grateful he can go at all.
So - home again and it's been a long day. Off to Exeter tomorrow to bring Kate home for the summer.