7th and 8th October - St Matthew's Passion

We've been sitting with him, either me or Moira, or both of us, for days now. We'd both tried different classical pieces to listen to. And we both kept coming back to a CD of highlights from Bach's St Matthew's Passion. It's lovely. It's calming. It swarms over you, it massages you, it's just so beautiful. Different parts of it evoke differing emotions, but it's not maudline, it's not bathetic. I think it's perfect for his funeral, and so does Moira, but we both feel guilty for saying that before he's 'gone', talking over him. It's surreal. It's the blackest of humour we're having between us, Moira and I. As soon as we laugh, we feel guilty. As soon as either one of us has to eat or pee or sleep we feel guilty, or disrespectful, or unworthy. One of us will go out for breakfast and bring it back. I'll go and see the kids for a short time. One of us will bring back some lunch. We'll sit. One of us will go for something for tea - or dinner - and clink back shamefully with individual bottles of wine and cans of gin and tonic. The staff keep asking if we want tea, coffee, soup, sandwiches, anything at all. They are so good. They come and move him every 3 hours. He's on an air mattress to avoid any sores, but he's so frail and thin that I can't imagine he'd have enough weight to make a sore. But the staff are so lovely, so kind, so respectful.

Moira had a bad spell when I was away seeing the kids. It was weird, because I was supposed to come back at 7 in the evening, after I'd fed the family, but I started back at 5, and got stuck in traffic. She called me, very upset, but I was already on my way, I knew that she'd need me to come back quicker.

There's a guest room at the home and Moira's been staying there, when she's not with Dad. It's like a very impersonal hotel room. Like somewhere Alan Partridge might have stayed in - in Norwich. It doesn't matter though. It's there, we use it when we need to get a few minutes sleep. The staff have made an effort to make it 'homey'. Towels, a hairdryer, tea and coffee, shampoos, shower gels. The people that work at the home are great.

I honestly - although I have complained about individuals in the past - think that a good care worker is one of the most undervalued people in the world. Whether that is one who works in a care home or one who cares and works in their own home for their loved one.

I'm all disjointed. All over the place. Lack of sleep.

He's so pathetic now. I remember years ago when I first visited the home, thinking that some of the residents looked like holocaust victims. Dad looks like that now. His face is sunken, his skin has so little flesh below it. I can hold his hand now. I can stroke his hair. I can kiss his cheek and touch his face. I didn't do that when he was more aware. He and I weren't able to be 'touchy feely'. Our barriers didn't allow it. We don't have barriers now. There's none left. I've changed his incontinence pad in his old age, like he may have changed my nappy in my childhood. Full circle.

Sorry - all over the place. Very tired. Not sleepy but tired.

6th October 2008 - Vigil start

He's 'Nil by Mouth' now. his swallowing reflex has left him. His time is numbered in days now, not weeks. My sister is coming to stay for the vigil. It must be so difficult for her. She has to leave her son in London with his nanny, leaving him with the knowledge that she'll be back when his Puppup is dead.

I'm glad she's coming though. The longer I stay in his room with him on my own, the more I doubt the decisions I've been making - even with the support of the doctor and my siblings. I know the 'Do Not Ressuciate' decision is right. I know the decision not to tube feed is best. But when I sit with him on my own, I start to talk to him, talk and remember, and sometimes look forward, and then I begin to doubt. It's tiredness too. When you are so tired and so sad, you're mind wanders from your known loadstone, your known right.

3rd October 2008 - Beg pardon

Dad was a bit brighter yesterday. I managed to feed him a yoghurt, cup of orange juice, one of tea and another of diluting juice. We even managed to have a verbal exchange. He burped, after one of his drinks, and I said "Pardon" and he said "Beg pardon". When I left he was sitting supported in bed and looking awake.

That was yesterday.

Today when I went in this morning I met Pretti who told me how he'd eaten well the previous evening, even had some cheesecake and mince at tea time. Cheesecake and mince, hmmmm, nice. And she was going to get him through to the day room later that afternoon. So I was expecting him look as bright, if not more so, than when I'd seen him last.

He wasn't looking bright. Not bright at all. He'd scratched his face during the night and his face was covered in red lines and weels. I kicked myself mentally, because I'd noticed the length of his nails before and had meant to cut them - even got as far as bringing in clippers, but forgot to use them. He was glistening with petroleumm jelly that had been applied to his face to stop him being itchy. His mouth was gaping, his eyes have open with the familiar typewriter back and forth of his eyeballs beneath the lids. The smell in the room was the same. He wasn't for waking.

I clipped his nails, but he wasn't best pleased, pulling his hand away and grimacing. I don't think I could have been hurting him, I was being very gentle.

A woman knocked on the door and came in. I'd never seen her before, so she introduced herself as the home manager. She told me that he'd eaten well the previous day and that if I needed anything I should just buzz - and did I want a cup of tea. I didn't. I wondered if she'd been told I was in. Doesn't matter I suppose, she was nice enough. Stood at the bottom of his bed, straightened the covers, told me "At least he's not in any pain".

Whoever had woken him had put a CD on for him - the one I'd put in the machine three days previously. Opera arias and famous pieces of music. At one point Handel's Messiah was ringing in my ears... "For the lord God omnipotent reigneth. Hallelujah hallelujah hallelujah hallelujah hallelujah. The kingdom of this world; is become the kingdom of our Lord, and of His Christ and of His Christ. And He shall reign for ever and ever And he shall reign forever and ever And he shall reign forever and ever And he shall reign forever and ever"... oh yeah? Really? Really? And is that omnipotent God looking down on this shrivelled, skeletal, rotting man, a man who did very little harm, and thinking "You know, I think I'll let him stay like that a bit longer". Fuck off. Fuck right off. As Jim Royle would have it "Omnipotent my arse".

I really hope, though, that the last exchange I have with him is not "Pardon!", "Beg pardon". Now, that would be ironic. What a metaphor for our relationship, how appropriate that a stitled, pointlessly polite formality would be the last things we understand of each other.

See you tomorrow Dad. Maybe. Hopefully. Or do I mean hopefully not. Do I want him to go on like this? It seems unlikely that he's going to get substantially better, better enough to be able to have any quality of life. So maybe, maybe I mean hopefully not. Maybe I'm at the point of the man I met all those months ago who was hoping for his mother's death, hopefully waiting like an expectant father. I think it's time to tell my brother and sister.