In the Midst of Life

FAMILY INVOLVEMENT

Mr Elias Roberts had an enormous family, which seemed to expand with each passing day. They were Jamaican and had immigrated to England in the early 1950s, seeking a better life, better education, and better prospects for their children. They had stepped off the boats in their Sunday best, raw and hopeful, into an exhausted and war-torn England. A better time was a long way off. Jobs were plentiful because rebuilding Britain was a priority, but finding somewhere to live was near impossible. Mr Roberts had eventually found a single room at the top of a derelict house for himself, his wife and their two youngest daughters, but the older boys and girls had had to make their own way.

Mr Roberts was admitted to the Marie Curie Hospital suffering from prostate cancer, which had been treated by prostatectomy in the Royal Free Hospital. He had come to us for radium treatment but the widespread metastasis in the bones was clear evidence that the treatment had come too late.

When I was a young girl, I was told that men who had difficulty urinating carried a catheter coiled in their hatbands. When they needed to pass water, they catheterised themselves. At first, they would inevitably develop an infection, but the body’s immune system is built to fight that, and once these men had got over the initial bouts of infection, the body became immune to the germs lurking in the hatband.

Testing for cancer was not routine. Some men went to a doctor, but the treatment was fairly rudimentary – diuretics, potassium citrate, no alcohol, barley water – none of which was effective. Later, in the 1940s, the female hormones oestrogen and progesterone were prescribed in the hope of reducing the enlargement, but it is doubtful if these treatments did much good. Consequently, a great many men developed such massively distended bladders, filled with retained urine, impossible to pass normally or by catheter, that abdominal entry was necessary and a supra-pubic catheter had to be inserted to drain the fluid. I was in theatre once as the ‘runner’ - the lowliest member of the team - when a man was wheeled in with a massive lump in his lower abdomen; it was his bladder. He had not been able to pass urine for weeks. It was impossible, even under anaesthetic, to get a catheter past the enlarged prostate, so a supra-pubic insertion was made and more than a gallon of urine was drained off. The man died from surgical shock.

That was an extreme case, and the worst I have seen, but a great many men had to endure weeks in bed with indwelling catheters, twenty-four-hour drainage, daily bladder irrigation, uraemia, antiseptics and antibiotics before a prostatectomy could be attempted. Sometimes I felt that the catheter in the hatband would have been the better option.

This was all embarrassing and unpleasant for a sensitive man because there were very few male nurses in the profession; so young girls almost always performed such tasks. Incidentally, nursing procedures were comparatively basic. The following is taken from Wilson Harlow’s Modern Surgery for Nurses (1956):

There are various means of retaining an indwelling catheter in the male urethra. A common method is to attach four pipe cleaners, or two pieces of tape, to the catheter. The ends, which should be 4—6 inches long, are then brought up and fixed to the penis by a piece of Elastoplast or bandage. A similar retainer can be constructed out of a piece of sheet rubber fitted with holes and collar studs to fasten it to the penis and catheter.

I do not know what humiliations Mr Roberts had been subjected to before or after the prostatectomy, but when he came into the Marie Curie, the cancer was widespread, and there was no hope of cure. Nonetheless, the Chief decided on six doses of radiotherapy to try to control the spread, and eight if the results were favourable.

Mr Roberts’ wife and two of their eldest sons came with him. She was an unexceptional woman, apart from two trusting brown eyes that forced the word ‘integrity’ into your heart. She said that they would prefer to look after her husband at home, but they had only one room and had to climb sixty-four stairs to reach it. The Chief said that we would look after him well, and that they could visit any time, day or night. Doctors, I have found, make these rash comments without the slightest thought to the practicalities involved!

Mr Roberts said, ‘My days are numbered, so I thank you, kind doctor. My family will continue my life that is running away from me.’ He squeezed his wife’s hand and said ‘The Lord giveth and the Lord taketh away. Blessed be the name of the Lord.’ His wife whispered, ‘Blessed be God in his wisdom.’ The two boys said ‘Hallelujah’ and then one of them let out a howl. His mother said: ‘Abraham, you stop your noise right now. The good sister no want your noise in her nice quiet ward, you hear me?’ From such a small woman the effect was surprising and instantaneous.

The Chief smiled and left, saying, ‘I leave it in your capable hands, Sister.’ The wife left also, as the two youngest girls were due home from school, but the two young men said they were doing the night shift at a nearby warehouse, and could stay. As it was close to visiting hour, I agreed.

In those days, visiting hours were very strict. Too strict, I felt, but hospital discipline had to be maintained. I was glad to relax the rules when I could, but the Chief’s comment about unlimited visiting day or night was going a bit too far. Three o’clock came, and the visitors who had gathered outside were admitted. One or two wanted to see me, but mostly I was left in peace to check the drugs and equipment and to complete what little paper work there was to be done. At four o’clock I asked a nurse to ring the bell to inform people that visiting hour was over; almost simultaneously the clip, clip of high-heeled shoes was heard in the corridor, and three women walked straight into the ward. The eldest one was smartly dressed in a suit, and the two younger women wore pretty dresses. They all had hats and white lace gloves. I called to them, and they turned.

‘We come to see our daddy,’ one of the girls said.

‘But visiting time is over,’ I replied, ineffectually.

‘We come any time, day or night. The doctor, he say.’

‘Yes, but—’

The older woman stepped forward and folded her arms.

‘No but! Who are you, anyway?’

‘I am the ward sister,’ I said, hoping I sounded confident.

‘You!’ she said scornfully. ‘You too young to be ward sister. In Kingston, ward sister is a big, strong mamma, fifty years of age, a woman who know how to handle men. Not skinny girl like you, no way.’

I was completely squashed.

Visitors were beginning to leave and we were blocking the doorway. I stepped aside and the three women took it as a sign that they should proceed to Mr Roberts’ bed. The two men stood up. One of them kissed the two younger girls, calling them sister Faith and sister Mercy, and the other said to the older woman, ‘Well, well, Aunt Adoration, what you doin’ here? Long time no see,’ and he shifted on his feet with a smooth, boneless motion.

‘You no smirk at me, nephew Zachariah. I come to see my brother Elias, is sick man. You no smirk, or I wipe that smirk right off your silly face.’ The boy sat down and shrugged effortlessly, his shoulders moving like running water.

They brought a chair for the woman, who sat very close to Mr Roberts.

‘Brother Elias, the Lord, He send a visitation—’

‘Is you the visitation, Aunt Adoration?’ said the boy.

You be quiet, saucy puppy. Brother Elias, the Angel of Death come visit you, but you be strong in the Lord and be not cast down, hallelujah.’

‘Hallelujah,’ chorused the girls.

Several visitors, still lingering, looked at them. It was time to intervene.

‘It is ten past four, and visiting hour is over. We have work to do, so I must ask you to leave.’

The older woman settled comfortably in her chair, and took off her gloves, before replying.

‘The doctor, he say we can visit any time, day or night, his wife tell me. I come all the way from Notting Hill to sit with my brother Elias.’

She removed the pins from her hat and stuck them into the felt, and removed her hat, a gesture loaded with meaning. ‘No way.’ she muttered. ‘Skinny girls, huh. Mercy, pass me my bag.’

From the bag she removed two small cushions, one of which she sat on. The other she placed comfortably at her back before glaring at me.

‘No skinny girl tell Adoration Consolation da Silva what to do,’ she announced, and waved her hand to shoo me away.

The girls giggled behind their hands, exchanging glances. The boys looked up to the ceiling and whistled silently. I was floored. It was time to see Matron.

‘What!’ she exploded, ‘the Chief said these people might visit any time, day or night?’

‘Yes. I was present when he said it.’

‘Doctors! We could run this place very much better without doctors,’ she muttered, as she accompanied me back to the ward.

It was a fighting start, but unequal from the outset. Matron had the advantage of being the older woman, but she was also a softie, and no match for Mrs da Silva, who won on points. Eventually, it was agreed that when essential work had to be carried out, the ward would be closed and the family could wait in the visitors’ room, which was on the ground floor.

The five people disappeared downstairs, and I went to Mr Roberts’ side. He was a very sick man, and looked exhausted and grey. He could hardly move, but he murmured, ‘Thank you, Sister.’ I checked his urine drainage bag, which was heavily bloodstained, and resolved he must have more potassium citrate and more fluids. I examined his supra-pubic wound, which looked clean and comfortable. I asked if he had any pain, and he breathed, ‘No more than usual.’ What did that mean? Pain is unquantifiable, and no one can assess the degree to which another feels it. He seemed to me to be a man of great courage, and as time went on we all began to recognise his outstanding qualities. Later, the Chief said to me, ‘I have seldom seen a man approach death with more nobility.’

We had finished serving supper, the drug round and the essential bed changing and dressings, so I thought I would go to the visitors’ room to see if any of the relatives were still there.

There were now not five people, but eight. I said that two could come upstairs to say goodnight to Mr Roberts, and Aunt Adoration stood up. But at that moment Mrs Roberts came in, accompanied by two younger girls aged about thirteen or fourteen, so I said that she should come up with her daughters. The aunt blustered about being first, but Mrs Roberts said quietly, ‘Hold your peace, sister Adoration. Do you not remember our dear Lord’s words “and the first shall be last, and the last shall be first”? Hold your peace. Come with me, Daffodil, and you also, Ruby, and we go softly, not to disturb the quiet of the evening.’

Mrs Roberts was the only one who seemed to understand that a dying man needs rest and tranquillity, and, above all, peace in which to approach the ending of life.

That was only the first day. During the next three weeks the stream of relatives was constant. One woman, a cousin I think, turned up with three small children, who were sweet and pretty, but a perfect nuisance. I couldn’t let them into the ward, so they raced around the ground floor. We let them out into the gardens, which were normally reserved for ambulant patients, and they shrieked and whooped as they chased each other around, to the anger of the gardener who regarded his garden as a sanctuary for the sick. We tried to limit visitors to two at the bedside, but frequently there were four or five. Brothers arrived from Birmingham, a sister from Bradford, and the sons and daughters who lived locally came every day.

Poor Mr Roberts had no peace, but he never complained and, as far as we could see, never showed any irritation. He was always courteous, and even though he could barely move or speak, he would open his eyes and smile, and perhaps murmur, ‘It is kind of you to come. You are welcome,’ and then drift away again to where senses and perceptions are beyond our understanding.

We all knew what would happen, and it did. Other patients, and particularly their relatives, started to complain. ‘Why is he allowed unlimited visiting time, when we are confined to the specified hours? It’s not fair.’ And it wasn’t, I had to agree.

It was difficult for us, because at the same time we had a similar problem with Mr Winterton, who was an alcoholic. Alcohol is not allowed in hospitals, but you cannot withdraw all supplies from a true alcoholic and expect his body to adjust overnight. He will go berserk. So, a daily dose of whisky was measured out for Mr Winterton at each drug round. This soon attracted the attention of the other men, some of whom called out good-naturedly, ‘Come on, Nurse – splash it around, be a sport.’

Others complained, ‘If he can have whisky, why can’t we?’

‘Alcohol is not allowed in hospitals.’

‘Yes, but…’

It was a circular argument. We even turned a blind eye to his wife bringing him extra supplies in a hip flask. She was a glamorous and interesting woman – an actress, who earned a lot of money on the stage – and she was devoted to him. Mr Winterton had real charisma, and all the nurses, myself included, felt it when he turned on the charm.

One day I had a telephone call from a woman enquiring about Mr Winterton. You have to be guarded about supplying information to anyone who rings up, so I said that the patient was comfortable and that his wife had just visited.

‘I am his wife,’ replied the voice.

Silence from me!

Yes, I am Mrs Winterton. The woman who has just left is not his wife. Did she tell you that she was?’

‘Yes.’

‘Well, she isn’t. I am. What does she look like?’

I described her.

‘I know her. She’s an actress, and a very good one at that. She is also either a saint or a fool, I don’t know which. She has kept that worthless man for years, moving him from one hotel to another along the coast. When the police pick him up drunk and disorderly, she sorts it out and pays the fine, then moves him on to another seaside resort. She has saved me a lot of trouble.’

It’s hard to know what to say to a story like that. After deep thought I said, ‘Oh.’

‘Well, I had better give you my address and telephone number, so that you can inform me when he dies.’

That was the end of the conversation.

We still called the glamorous woman who brought in illicit bottles of whisky Mrs Winterton, but I looked on her with very different eyes. A saint or a fool, which was she? And is there much difference? The Orthodox Church has a concept of the Holy Fool – one who is a fool in the ways of the world, but wise to the ways of God. Are we all ‘fools to love’? Not so; I think the opposite – that the lover is all-wise and sees in the beloved the goodness that no one else can see.

We could not halt the metastases in Mr Roberts’ emaciated body. The treatment was proving to be worse than the disease, so after three doses of radium the Chief proposed a halt. He spoke to Mrs Roberts, who said: ‘I know. God’s will be done. The Lord God say, “Can you command the sun to rise, or the sun to set? Can you move the moon from her course? Did you set the stars in motion? Can you number the days of a man?” I know what you saying, and I see it clear. He is my husband and the father of my children, and I will speak with him. He is ready to die, and will be grateful.’

We stopped all active treatment and increased his sedation and she asked us: ‘Is it always right to reduce pain? I am not sure. We are born in pain and some of us will die in pain – is this wrong? If there is pain and suffering in this world, there must be a meaning to it. Some of us have to learn this meaning.’

I said, ‘We always try to relieve suffering.’

‘Yes, I know, and because I am not sure about the right or the wrong, I must leave it to you to decide.’

Then she laughed, a big chuckle that surprised me.

‘There is one thing, Sister, that I am quite, quite sure about. Quite sure. He does not need food. Your nurses bring him food, they try to feed him, and he push it away, he turn his head. They try again. It is a nonsense, a child’s game. He cannot eat, and does not want to eat.’

She chuckled again, and her face creased with merriment.

‘Does a man need porridge or scrambled eggs when he come to the Pearly Gates? No way. He need a clean mind and a pure heart.’

I laughed with her, and said that it was hospital practice to feed patients, even to the point of force-feeding.

Her merriment vanished. ‘You not goin’ to force-feed my husband,’ she said emphatically.

‘We will not try to feed your husband any more, I assure you. But what about drinking?’ I asked.

‘I give him water, it trickle out his mouth. A nurse give him water, he try to swallow, but the water, it choke him. Does he need water, Sister?’

I said we all need water to live.

‘But he is dying, not living. It is different.’

I said that if he had no water his death would come more quickly.

‘But does that matter?’ she asked innocently.

I had to pause. What a question! Does it matter? I had asked myself that question many times but never dared to voice it. Hearing the words spoken aloud by this woman was a shock. Do we try too hard to keep people alive? And what are we doing it for?

I said, ‘I cannot allow a patient on my ward to die of thirst. It is against all my teaching, principles and practice.’

Yes, Sister, I understand you,’ she said quietly.

‘If he has no water his kidneys will make less urine, and there will be more blood and infection in what little urine is in his bladder. It will be very bad for him.’

‘I understand,’ she said.

‘We planned to put up a drip today.’

She jerked up and looked me straight in the eye. ‘No. No drip.’

‘Why? Does your religion forbid it?’

No. We are Methodists, not Fundamentalists. I don’t think it is forbidden. It just seems wrong, unnatural.’ Her face dissolved in tenderness. ‘He is at the point of death, Sister. He is a good man, and has led a good life. Let him rest in peace.’

I said I would discuss the matter again with the doctor. But I also said that, as he could take very little fluid by mouth, it was important to keep his mouth and throat clean and moist, and that one of the nurses would show her how to do this with swab sticks and moistening solution.

After that conversation, his wife never left him. The family, varying at different times between eight and twenty people, more or less camped downstairs, but Mrs Roberts strictly controlled the number of people who saw him. We put him into a single room, and no drip was installed. The family was assiduous in keeping his mouth and throat moistened, and he took a few ounces of water now and then. Some of the younger members of the family helped the nurses to clean and change his bed, and to attend to pressure points. They liked doing so, and almost fought for the privilege.

The family brought food for Mrs Roberts, and we provided cups of tea and coffee from the ward kitchen, for which she always thanked us most graciously.

It was a busy morning, and she carried her empty cup into the kitchen, saying, ‘I see you are busy, I do not need to trouble you to collect my empty cup,’ and she put it on the draining board.

When she got back her husband was dead.

It happens this way, time and again. So many people will say something like, ‘I only went to answer a knock at the door, and when I came back she was gone,’ or, ‘I just went to the window to draw back the curtains and look down at the garden, and when I turned round, he was dead.’

Why does the person so often die during the minute or two when the watcher is absent? There must be a reason. It happens this way far too frequently to be a coincidence. Dying is not passive. Dying is not something that happens to you without your knowledge or control. Dying is an active process, in which the soul is the leading actor.

There is more, much more, to human life than mere flesh and blood, bones and brains. There is a living spirit that is the spark of life, and when it knows that the flesh, which it has animated for a while, is decaying, the soul wants to slip away quietly, when no one is looking.