This week I went back to my writing class. I almost didn't make it but I'm so glad I did. This was Week three and I've missed the first two, once because of a hospital appointment with Roch and once for a doctor's appointment and feeling generally unwell. Anyway, I was in two minds about going because Donna was coming to see us later that morning and I really didn't want to miss her visit. Donna is Roch's Hospice Nurse and as you may remember, her visits always cheer us up. Now you wouldn't have thought that, would you? We can talk to Donna about just about anything. We don't just talk about death and dying - but we can if we want to, and we do, sometimes. Of all the many professionals we have met and who support us, Roch and I agree that Donna has been the star. That's saying something, because so many of the people we have met so far have been exceptional. This week, it was time for a catch up with Donna. The last time she came, Roch told me that she watched him make her a cup of tea. She sat and chatted and watched him. It's her job to notice things, to look out for changes. This time she asked him if he would like her to make the tea. This time he said yes.
One of the things he talked to her about this week was his Advance Directive. He's been working on this lately. It's a document which records his wishes regarding the witholding of medical treatment and giving guidance to his health representatives (me, Kate and others he may wish to nominate) if he can no longer communicate. It is also sometimes called an Advance Decision to Refuse Treatment. All very sobering but he says that having given it some thought and begun to work on it, he feels better about things. As Donna says, it's a draft, he can go back to it whenever he likes to update it if he changes his mind about anything.
It's a year since Gerry McDonagh died and I refer you back to my post of 3rd November 2010, where I talk about Gerry's admission to hospital and the circumstances in which he passed away. I'm sure Gerry and his wife Pat are very much in Roch's thoughts at this time, as they are in mine. The fear of the end is never far away for Roch, I think, and drafting his Advance Directive is one way to attempt to have some control over what happens. I find it hard to think about. I try to be matter of fact about it when he talks about specifics but it's not easy. I am conscious of a strong desire to get up and walk away. But I don't.
Other things Donna noticed, and we talked about - he's losing weight, but still not enough to worry about. His upper arms and his legs are thinner now. He's still eating and drinking normally, but his arms are getting weaker. Sometimes he finds it difficult to raise the fork or spoon to his mouth. He can still feed himself - he supports his right arm with his left hand and I haven't had to feed him yet. He won't like it when it comes to that, but he has mentioned this to the occupational therapist, Rachel, and she is coming back to us, hopefully with some suggestions. She has already provided lighter cutlery.
We talked about our visit to Tiz and the arrival of the BiPap.
Donna always asks about his reading material which we laugh about because it's never very cheery. She encourages him to stay in work while he can and I am with her on this. Of course, it's his decision but he is so good at what he does and working makes him feel good about himself. In general, he doesn't feel so good about himself anymore.
I think she was cheered by the fact of the coming Stag weekend. When Roch decides to do something, he really goes for it and he is really looking forward to this. All the brothers plus old friends from home and sound mates from London will be there. Sixteen in all, I believe. In fact, I'm not sure Dublin knows what's in store, but if it survived the Viking invasions, I'm sure it will survive Roch's Stag weekend.