I find that I can't work on two levels. I can't suddenly switch and say, “Well, I'm doom and gloom now for the next hour” and then suddenly change and go up on to a different level. And that's a hell of a problem for me personally. Luckily my daughter has stepped in there.
She's been to the meetings and can talk with [the specialist nurse] on a very friendly basis. And in fact she got all sorts of information that I wasn't aware of, of the desperate sides of this disease that I wasn't aware of.
I realised that she was enquiring about items that I don't really want to know about, although I've got to know about. But she's sort of taken up that role. So I'm very grateful that, and I had a definite discussion with her on the last time she was down, which was about a fortnight or so ago, about this aspect and I said, “Look, I'm finding it very difficult to talk about certain aspects.” And she said, “Well, would you like me to deal with that side?” And she offered to do it. So I have sort of offloaded my responsibilities, if they are my responsibilities, on those sides a little bit. And my daughter has taken them up and is prepared to discuss. Because I think my wife has already asked her to say, “Look, if I am getting in a downward slide or state, then I would like to know.” And she will be able to communicate probably on a little bit easier basis with my daughter than with me.
I don't know whether that makes sense or not, but that's the way it has developed. And I'm very grateful because I find death and all that entails very difficult to manage. And, those aspects and the serious side of what may happen with my wife if she becomes incapable of moving, losing use of her limbs as well, and all that aspect. I find that desperately frightening and worrying. I may have to face it, and well, I will do when it comes. But to discuss it before it happens is something very hard for me. |
