What do you say when your husband tells you he's not a whole person anymore, not a 'normal human being', when he turns his face away from you to hide the tears? When he compares what he considers to be the few tasks he carried out today, which have left him feeling exhausted, with all the things he was able to do a year ago? When he blames himself for all the shit Kate and Tom will have to deal with, are already dealing with? When he tells you he is contemplating all his losses, the 'lost' Roch and how his physical powers are diminishing - and also the future which has been taken away from him. His counsellor often talks to him about how he will never see his grandchildren. He has told me that he feels this is intrusive. It's not something he thought about until she mentioned it. Now he sits beside me and mourns this loss. I hold his hand. This is not a time to offer false hope, make an attempt at humour or talk about how we don't know what will happen, that every case is different, that there are the possibilities of a longer life. He fears a longer life spent in decrepitude. This is not a time to speak in platitudes. I say 'I am so sorry Roch, I am so sorry', and I am, I am deeply sorrowful. I listen, and stroke his hand and feel helpless. I do tell him that he is not to blame for the shit that we all will have to deal with, that Kate and Tom are stronger than he thinks, that he cannot take on all their stuff. That they will have other influences in their lives, other sources of support we may not be aware of now. But this doesn't help. 'I should be that influence,' he says. 'It should be me supporting them, but I won't be there.' So I shut up then. Nothing I say can help him.
He worries that he won't be able to protect his brothers and sisters from his reality when they visit at the weekend. Why should you protect them? I ask, why shouldn't they know how it is for you? He nods. We agree however that we do fear interference. Some may deal with their sadness and feelings of helplessness by making obvious suggestions, by trying to interfere. It would be easy for me to feel insulted and I know I can be defensive and I will have to watch myself. By Friday of course, Roch may be feeling better. The very fact of the Family Visit may cheer him.
After a time, he withdraws his hand and asks for a tissue. He's not surprised when I produce one, he remarks that in twenty years of marriage he thinks there has only been one occasion when he has asked for a tissue and I haven't been able to oblige. He tries to stand but it's a struggle. His legs are very weak now. The stairs are terribly difficult for him. The transition to a downstairs bedroom is not far away. We plan the actual move for after Christmas. I'm wondering now if we should be organising this sooner. We are minimising the trips upstairs. The wet room should be finished today and in fact, Roch is already using it almost exclusively. I can add the finishing touches over the next few days.
In a year, a lot has changed. It's hard to focus on the positive sometimes, to be grateful for what we still have. I just don't think about the future if I can help it.