Margaret did not find it at all amusing. Funny how humour dates. I didn’t find it very funny either, though I did when I read his column many years ago. His smart remarks now seem laboured. But in the book, he praises the hospice system, describing how it is a British invention, but has become popular across the USA.
I had not been aware of it being a British creation. I had assumed some sort of system to care for the dying must always have been there, back to medieval times. But the system as we know it now was begun by Cicely Saunders (1918–2005). I looked her up and found she read PPE at Oxford and in 1940 became a nurse. In 1948 she fell in love with a patient, a Polish-Jewish refugee, working as a waiter, who had escaped from the Warsaw ghetto. He was dying of cancer. He bequeathed £500 to Cicely. This was the germ of the idea of starting a hospice. She later qualified as a medical doctor. She was made a Dame in 1979. I told Margaret all this the next day, but she was too tired to take it in.
I talked to Dr Lodge today and remarked how I noticed that there were empty beds in the little ward. I said that surprised me. ‘Yet people must be dying to come into this hospice . . .’ He smiled wearily, no doubt having heard this joke before.
He explained that the funding for the hospice was half provided by Marie Curie, which is a charity, and half by the Royal Free. He for example works half his week at the Royal Free as a consultant, and half in the hospice. He walks between the two, which only takes ten minutes. He usually has his lunch on the way – munching a sandwich.
He said at the moment, they were okay for doctors in the hospice, and also for the cleaning and basic care staff. The problem was getting nurses. Nurses can’t afford to live in London. This was why at present those beds were empty.
How awful to think of this wonderful building, with all its amazing staff, doing such good to so many people, yet for the lack of enough nurses, they have empty beds.
When I told Margaret, she got me to promise that when she died I would give a large donation to Marie Curie. She suggested £50,000. I coughed, said hmm, I’ll think about it. That was what I gave a few years ago to a charity in Lakeland, the Cumbria Community Fund. Seems only fair we should give back something to both London and Loweswater. We have taken so much from both of them.
M has started trying to write a few words with her left hand, which still has a slight bit of movement. She does it ever so painfully and the result is appalling, like a spider crawling across the page, but she is persevering and has even written a few thank-you cards to her close friends.
‘A new woman came today,’ she said. ‘I think she is from the Philippines, like most of them. Just arrived, at the bottom of the caring ladder. She was trying hard and asked me when she left the room if she could do anything else for me.
‘I said, “Yes, there is one thing . . .”
‘ “What is that, Margaret?”
‘ “I would like you to smile,” ’ said Margaret.
The woman was confused. So with her left hand, Margaret pushed open her own lips, indicating what smiling was. At last the woman smiled.
‘Oh you have a lovely smile,’ said Margaret.
The woman left, smiling.
25 JANUARY 2016
M had more bad dreams in the early evening, convinced she could move her legs, but of course she cannot. She thought she was going mad, so wanted to ring for help, but could not find the switch. In doing so she knocked over her water jug. That helped as a distraction, taking her mind off the panic of failing to move her legs.
She then experienced a sudden flash of lightning in her head, right across her brain, light and noise and heat. After that, she felt fine. She went to sleep, her head cleared.
She told a nurse in the morning about this strange experience – but the nurse did not know what she was on about. Having only recently arrived from the Philippines.
More trouble in the night with the contraption for the bowels. There were explosions which she can’t hear, or smell, till the care staff come in the morning and discover it. They then have to forcibly get out the rest of her shit. She can’t feel a thing. Her body is dead from below the waist. She feels so sorry for the staff, having to do it, so cheerfully.
‘Everyone has a poo chart, so they filled in mine when they had finished. Dear God, my own poo chart. I never thought it would come to this . . .’
She was almost amused, almost smiling.
She has a TV in her room, high up on the wall beside her bed, but has never put it on. She won’t let others put it on for her either, even though I have suggested it might distract her in the evenings when she thinks she is going potty. But she is still listening to the radio, though she puts it off when staff come in.
She listened to Saturday Review on Sat, which she always listens to at home, but fell asleep before the end.
‘When I woke up, I thought I will go downstairs now, see if Hunter has finished reading the Guardian. When I realised my mistake, I suddenly felt homesick. I haven’t been homesick up to now.
‘I am often at home in my mind, going round every room, checking things off, but it’s the first time I thought I really was still at home . . .’
26 JANUARY 2016
Shock news today. One of the registrars has told M that she could possibly be discharged.
At one level it is good news. It indicates she has been stable, that they have made her comfortable. But how on earth will we cope at home, providing twenty-four-hour care and attention? How can we inject her painkillers, work her bowels, give her an all-over body wash, give her physio and react at once in the middle of the night when there is a drama?
She has now been in the hospice almost three weeks. It was meant just to be respite care. So it only seems fair to make the bed vacant for someone truly at death’s door.
She and I discussed where she will sleep, if she does have to come home. Downstairs is best – but not in the front of the main room as she does not want people looking in. So at the back, where she will get the garden view.
But I was too stunned to concentrate properly on the logistics. I had assumed this was the endgame, the final stage, she would never come out, that she would end her days here, and end them ‘pleasantly’. She can’t possibly feel pleasant at home. Even reorganising the whole house, getting round-the-clock care, medics visiting, she will be frantic, shaking, in a panic, a danger to herself, as she was when she was at home.
Before she entered the hospice, I wanted her to die peacefully at home, in her own bed. As she did. As most people do. But not now. I now know how wonderful the hospice is, so secure, so reassuring, perfect for the terminally ill. A house isn’t. So what will happen now?
25
THE BIG MEETING
29 JANUARY 2016
The meeting to decide Margaret’s immediate future was today. Flora decided to come as well, and drove me over.
M was being washed when we arrived so we sat in the family room. A social worker came in, introduced herself, said she was coming to the meeting. She said we were lucky with M being semi-paralysed. That meant under Camden rules she would qualify for a full-time live-in carer. Oh wow, thanks a lot, great news, thanks for sharing.
The meeting was held at M’s bedside. There was Dr Phil Lodge, the social worker, a sister in charge of discharge and another woman, not sure what she did, plus a medical student who just listened.
Phil did most of the talking – and so, surprisingly, did Flora. Yet she had said beforehand she would just sit and listen. She was very strong and outspoken, criticising them for suddenly springing on Margaret and on us the fact that Margaret might have to go home, when clearly she was in no state to go home.
It all seemed really to depend on Margaret herself expressing unhappiness, saying she feared going home, that she would not survive at home. So we all waited to hear what she would say about the proposal to send her home.
‘In an ideal world,’ she began, speaking slowly, with great effort, forcing out each word, ‘I would like to be at home.
If the same sort of help could be provided that I am getting here. But how could it? There would be no bell to press in the middle of the night for the night doctor to come.’
‘What about a nursing home?’ suggested Dr Phil.
Flora flew at him. ‘She is NOT going into a nursing home!’
‘I understand,’ said Phil, meekly.
I did say a few words about the sorts of emergencies already happening, her bowels exploding in the night, having panic attacks. How on earth could we cope with any of that at home?
M looked very tired, the worst she had looked so far. It had been an effort to talk, to formulate her words, and give her opinion, which had always been so easy for her all her life, whether asked for her opinion or not. Now she just wanted it all over. She apologised for having no energy. Then closed her eyes.
I asked when the decision would be made to chuck her out, and who would make it and why?
Philip then started to speak, almost as slowly as Margaret. He said she was in a bad situation, though there were some who were worse. But, all things considered, it would be best for her to stay here.
‘Is that the decision then?’ I asked. ‘She can stay here?’
‘That is it,’ he replied.
Everyone smiled. It had been like a High Court case with the jury having finally reached a popular verdict.
Afterwards, in the lounge, the social worker said the decision was never in question, but they had to go through with the process. Hospice beds were in high demand. They were expensive, costing about £300 a day, as opposed to only £200 at home, even counting a full-time carer and a district nurse.
On the way home, I revealed to Flora something I had not told her, or Caitlin and Jake, as M had sworn me to secrecy. Almost exactly three months ago now, the oncologist had predicted that M had just three to nine months left.
Flora said she always knew we must have been told. And she had suspected it was three to six months, not nine. I then could not remember whether we had been told six or nine months. I said I would check when I got home. Good job I had been writing everything down.
1 FEBRUARY 2016
M said today how interesting it had been during the last three weeks having our three children coming to see her, each on their own, sitting by her bedside, making inconsequential chat, going on about what they had been doing. She saw different aspects of them. Jake seemed stronger. Flora was more dominant – especially at the discharge meeting – and Caitlin had an impulsive streak she had never been aware of.
2 FEBRUARY 2016
A bit ratty today.
I asked her when she wakes up in the morning does she immediately know where she is, realise what has happened to her?
‘Yes, of course,’ she said, curtly, as if she could not possibly be unaware of the state she was in. I said that after three weeks at home, on my own, I was still waking up and not knowing where I am. I never know what I do next, where I have put the kettle for my tea.
‘You have always been like that.’
‘So how do you feel when you wake?’
‘Depressed of course, what do you think?’
‘Does taking one day at a time help?’
‘Not really. I feel trapped. That is the worst part. Being trapped. That is worse than knowing I am going to die. Because I can’t move my legs, I can’t move, not at all. So for three weeks, I have lain, twenty-four hours a day, on my back. All my life, I have never ever slept on my back.’
3 FEBRUARY 2016
M has always been so strong in every way – physically, mentally, intellectually, emotionally – all her friends and family were always struck by it, which is why they looked to her for her opinion and for her help. She never moaned or displayed any doubts, fears or weaknesses. It’s tragic seeing her now, getting frailer every day, yet mentally still strong, clear and lucid, if very tired. There have been no tears, no signs of depression, at least on the surface. During the whole of the last year I have seen tears only once – that one night, in bed. She has been so strong.
4 FEBRUARY 2016
M was on oxygen when I arrived, so her breathing, which had been getting bad, was a bit better, but for the first time she did not seem mentally bright and alert.
She did not want to talk, answer any questions, got ratty when I kept on asking her things, about how she felt, what she was thinking.
‘I don’t think,’ she replied, wearily. ‘I’ve stopped thinking.’
She seemed blank, as if beginning to shut off. She had had Valerie Grove in the morning, one of our oldest friends, the author and Times journalist, who lives with her family in Highgate. She stayed forty-five minutes, though I’d said thirty minutes was now the limit. M said it had been fine, she had enjoyed having Valerie.
Some days, in the first few weeks, Margaret had been having four visitors, some at least an hour, without any appreciable tiredness. In fact she seemed to gain by them, as if stimulated by them.
But today she did not even have the strength to tell me any trivia about the staff, what they had said, or about a therapist who had visited. It was as if she could not be bothered any more.
She asked me to bring in one thing for her the next day – a pair of scissors. The staff are not allowed to cut toenails. A chiropodist could be called, but would cost £30. She knew I would not want to spend that. I ignored that remark.
She told me where her scissors were – in her yellow sponge bag, in her bedside drawer.
I dug it out when I got home. I never knew she had such a lethal-looking pair of medical-type scissors. But then I have never looked in her drawers, or her cupboards, or her desk or the shelves in her room or the sheaves of paper which have been lying on her desk for the last six weeks, covered with her immaculate handwriting. I know my place.
But I know that on her desk are the first sixty pages of a new novel. Over Christmastime she had told me about it, surprisingly. Surprising, because she never normally would admit to working on a novel.
5 FEBRUARY 2016
She looked exhausted today, totally blank, given up. She had the clipper things in her nostrils for the oxygen which was pumping away. No energy or desire to communicate. I chuntered on for a while, but got no reaction.
I then got out her nail scissors. I asked her where she had got them from. She said she had had them for years. Which is what she always said, if I happen to remark on a new blouse, a new top, new shoes, some new article of clothing. She would say she had had them for years. Then she would say typical, you never notice my clothes. I knew of course that she would never admit to having bought something new, unless I actually caught her, coming through the door with a Monsoon bag. And even then she would try to lie her way out of it, saying she had been in a charity shop.
I cut her toenails as carefully as possible. Her legs all the way up were dead, so she could not feel me cutting the nails. I presumed the blood would still flow, if I made a mistake and cut her skin.
I remember my mother asking me to cut her nails at the end of her life. Her nails were hard and crinkled and rock-like. Couldn’t even cut off a sliver. They were like cast iron. We had to take her to the health clinic in the end. A proper chiropodist did it, using an industrial saw.
Margaret’s skin seemed remarkably soft and smooth, her legs were not wrinkled or emaciated as I expected, despite not having moved them for so long.
It felt so highly personal and intimate, weird and strange and intrusive, yet she is my wife of fifty-five years. She would never have asked me do it if she had been fit and well. Feeling her skin felt funny. Looking at her naked legs, which of course she was not aware of, not being able to bend and look, or to feel my touch, I thought how I had never seen her naked for over forty years. Not since her first operation in 1975.
She said the doctor thought she had an infection. Which doctor? There were always lots of new young registrars. She didn’t know, couldn’t describe her. Yet a few days ago she knew the names of everyone. She said they had tested her urine
. That was all she knew. Then she went back to sleep. I realised she was too tired to be cross-examined further. She didn’t know, and didn’t care, whether she had an infection or not.
I left her, wondering how long she would sleep. There did seem to have been a big decline in the last twenty-four hours. All she clearly wanted now was to be out of it, to fall asleep, forever.
As I was leaving, opening her bedroom door to leave quietly, she suddenly opened her eyes and woke up again.
‘The Hoover bag,’ she blurted out. ‘It will need to be replaced. It must be full by now.’
‘Fuck the Hoover bag,’ I said.
But she was asleep again.
6 FEBRUARY 2016
Four weeks ago today she moved in. For three weeks she was in great form, lively, comfortable, not happy but content, relaxed, saying it was pleasant.
Today she was breathing badly, the oxygen connected, but she had no interest, no energy, eyes blank, lifeless.
I took in six novels which had arrived, newly published, sent from Becky Hardie [her publisher at Chatto]. She watched me blankly as I unpacked them, with no reaction. Just a week ago she would have responded immediately to each book – enthusiastically or otherwise. I read out the titles and authors. She said leave three – Julian Barnes, Anne Tyler, Rose Tremain. Take away the rest.
She would not answer any more questions, nor would she talk.
Was this finally the end? She clearly wanted to go. All these decades she had seemed a goner at times, then recovered. Could she possibly, miraculously recover life again?
I coughed and spluttered, then I said how much I loved her, how I will miss her.
‘In my mind, you will not be gone,’ I said. ‘You will be with me, all the time. It will not feel sad or creepy, being in the house alone. I will always be talking to you.’
‘You’ll be fine,’ she said, dismissing me and my soppy thoughts.
I said I will be back tomorrow. She said nothing.
‘You’ll be fine.’
Then she closed her eyes.
7 FEBRUARY 2016
Amazingly, she seemed much brighter today – alert, talking, listening, chatting. I stayed an hour, no bother. She even gave me some jobs to do – to send birthday cards and £20 each for Ella on Feb 18 and Noor on Feb 20, our great-nieces. Don’t forget, she said. She was always brilliant on dates. I found it hard to remember who they were, far less their birthdays.
A Life in the Day Page 28