In New York

In New York

Thursday, 15 September 2011

Ambushed again

We didn't have a great weekend last week. We were on edge with each other. We talked about it a bit the other day and agreed that we really had to acknowledge how shaken we were on Saturday by his inability to drive. He couldn't lift his left arm. He has driven since then. In fact, we went to Stanstead on Monday night to collect Kate, who spent a few days in Spain last week. He drove all the way with no problem at all. But it's the first indication of trouble. I always have to be with him, in case he needs me to take over. We decided that Saturday cast a pall over the whole weekend and further into the week in fact. This will truly signal the end of independence as he knows it. Why we were so shocked and surprised I don't know. In a way we're constantly on the lookout for these signs of further deterioration but on the other hand, I always feel ambushed. Maybe part of me is still hoping Roch will be different, somehow the disease will not take the usual course because it's happening to us and not to some other people we don't know. Rubbish of course.

Anyway, on Sunday I was sitting on our bed, applying make-up (best face forward). Roch was at his laptop, using his Dragon technology to compose a message. I absently (and rather rudely) commented on his sentence construction. Mea culpa. His reaction was more than I bargained for. He was really angry and swore at me loudly. I of course dissolved into tears and rushed out of the room (it really didn't help my mascara application). I knew I shouldn't have corrected him - how irritating for him - but I also felt his reaction was out of proportion to the offence. A little later, he apologised. I forgave him instantly. He wasn't angry with me. He was raging at fate and I rather conveniently presented him with a target for his pent up frustration and anger. We managed to talk it through. It's always the people closest to you who get hurt. I am not without blame myself. I've been irritable and short with him and I really don't want to be like that.

We made a rather special trip this week. It was a beautiful day on Tuesday and we were driving back from a shopping expedition. As we passed the little road leading to East Sheen cemetery, we made a spur of the moment decision to turn in and take the opportunity to investigate their natural burial place. Out came the wheelchair and we made our way through the cemetery in the sunshine. There is a small grassy glade, shaded with trees, where one can choose to be interred without a marker. It didn't feel upsetting because it didn't seem real. It's possible to reserve a spot there for five years and Roch is thinking about this. It's a sensible plan. Maybe he'll change his mind. Maybe the left arm had something to do with it.


  1. It's always upsetting when we get jarred by a dose of reality. When new things happen with Jude, I tend to go into a state of fugue for a week or two where all I do is the basics & sleep as much as I can. I'm fortunate in that respect, I guess in that I don't work & can afford the time to do it. Don't beat yourself up with regards to outbursts of temper. It happens with Jude as well, particularly when she can't easily make herself understood. I don't know if it's frustration, or just part of the disease.. With love, James..

  2. In many ways Roch is going through the worst stages of this illness. You lose in relatively quick succession some massive abilities like walking, driving and personal care. There is no escaping that the next couple of years will be tough but you do adapt. Not just to a loss of a specific ability but in the way you cope with ongoing losses. Acceptance isn't defeat, its just the starting point for the next challenge. Acceptance allows you to channel your energy into finding solutions instead of dwelling on what is no longer possible. I hope things plateau for a while and you can enjoy the many things which are still possible