Tuesday, 24 April 2012

Torch News

There's lots of admin to be done, which I've been getting on with rather slowly. On Friday I phoned the Olympic Torchbearer line to tell them that Helen will be unavailable. The person I spoke to seemed not to know what to do, so I left it with them expecting to receive an email in due course confirming the cancellation. So far as I was concerned they could cancel the Olympics too.

I just got a call from a charming lady bearing condolences and asking me if I would take Helen's place. I am delighted. Crying too, but this is very right. The Olympics are back on.

Thursday, 19 April 2012

Ninon de Lenclos

La vieillesse est l’enfer des femmes
Helen will never be old.

Wednesday, 18 April 2012


H died peacefully shortly after 7am this morning.  She just stopped breathing.  She was beautiful, lying at rest with her colour fading.

The hardest part so far was when the funeral people took her away.  No longer my Helen, now just Helen's body.

Tuesday, 17 April 2012

Let me whisper my last goodbyes

H hasn't woken since yesterday afternoon.  She has no response to touch or voice, other than to open her eyes very slightly when turned.

Monday, 16 April 2012


H is barely moving now.  Her breathing, with the aid of oxygen, is easy enough, but she can't hold a beaker to drink from it.  She can nod when I offer her something she wants.

On Saturday H agreed to increase her dose of both diamorphine and midazolam.  We've increased the diamorphine again today because she was in some pain again.

I've told all the children that it will be only a few days.  They are all getting on with their lives.

Saturday, 14 April 2012


This never would have made sense to me before, but it's a comforting thought that I could split some of H's drug supply with her and lie down with her forever.

Don't worry, I'm certain I'm not going to do it.

Friday, 13 April 2012


When the children were babies, I used to go and check they were breathing, just because it was good to know.  Now when I've kissed them goodnight I come back and check H is still breathing, because she might not be.

How much tranquillizer?

On Wednesday we reduced H's midazolam from 25mg to 20mg, and on Thursday morning, after a difficult night, the nurse was very keen to increase it again but I refused.  On Thursday night for the first time for over a week we weren't given a "hospice-at-home" nurse: I don't believe that's because of the disagreement, but I couldn't help considering the possibility.  H didn't sleep at all, so nor did I very much.  I consulted three of H's colleagues none of whom was against increasing the dose again, so now it's back to 25mg and we've got a nurse again tonight.  The lead nurse from hospice at home came to visit this morning, and suggested that we should raise the dose further: she says that when patients are relaxed enough at night they often have moments of increased clarity during the day.  I'm sceptical about that.

This afternoon I noticed that H's drugs line had more bubbles in it than usual.  I watched it until the motor fired: the bubbles didn't move and a drop of syringe contents leaked from the top of the line.  So I suppose H had been getting no drugs since the syringe was refilled hours earlier.  I phoned for a nurse who came and sorted it out.  Later, H was in some pain, and also unusually lucid: I don't think that's a coincidence.  It seems to me that it might be best to reduce the dose of sedative for a few hours during the day and increase it at night, but no one's offering that option.

The lead nurse also told me that it's common for terminal patients to have a few days when they're more vigorous before the final decline.  She advised me to talk to I&S about how little time there may be left.

Tuesday, 10 April 2012

More food less drugs

H has slept for  most of the last two days.  I've been thinking that she may be on too much midazolam - the lack of mental clarity that results makes her anxious in itself.  Her GP agreed to try reducing the dose a notch.  The nurse didn't want to change anything over Easter while they were understaffed to cope with adverse consequences, but we've done it today and it seems to me that H is better for it.  She got dressed and came downstairs for a few minutes again this afternoon.

Now I'm trying to get her to eat something...

Monday, 9 April 2012


This morning, H got to the bathroom for a bath.  This afternoon, she got dressed and came downstairs for a few minutes.  All sorts of people manage that, I know, but considering how ill she was a few days ago it's remarkable.

Saturday, 7 April 2012

8 today

S is 8 years old today.  In the morning H sang happy birthday and at tea time she ate jelly and ice-cream - the most she's had for days.  In between I took S to Build-a-Bear.  S had a very happy birthday, thanks to all the help we had from family and friends.

Friday, 6 April 2012


Surprisingly, H has got physically stronger during the week: she can now walk a few steps unaided.

This doesn't change things very much, but it makes me smile a little.

Thursday, 5 April 2012

The big Boss

At dinner today S said I should sit at the head of the table because I'm "the big boss".  Later, decorating fairy cakes, she made one for me, writing on it "Daddy   The big Boss".  I never had that job before.

Wednesday, 4 April 2012


H was a difficult patient today - it's good that she's still got the energy.  I couldn't safely leave her at all, so my elder sister came over and took care of I&S.

I think I'd be a better nurse if I were a natural chatterer.  At one point H demanded that I read a book: I picked up The White Tiger which I saw had a bookmark quite near the beginning from our honeymoon.  I read a couple of pages, but H said she couldn't follow it.  I may read the book anyway.

Wedding Anniversary

H was more lucid yesterday, especially with visitors, but drowsy and confused today.  She did have a clear moment late this evening when we were able to exchange a few words.

My brother and younger sister came for the afternoon and told me to get out of the house.  So I went with IA to the barbers', where we were overdue.  We both get the same cut: it makes me feel like a proper dad.

Two old friends drove three hours each way this evening to visit H.  I enjoy seeing the recognition in her eyes.

Sunday, 1 April 2012


After a restless night, H has slept almost all day.  When she stirred, she wanted only a few sips of water, and my hand to hold.  She pushed away her oxygen mask and the bedclothes the nurse had put on her.

Sleep well, my love.