They had two years of intense living and loving. They counted each new day as a gift from God to be lived to the full, and every hour was filled with rich experience. He loved music and had been a choral singer all his life, so, with the conductor’s permission, he continued weekly rehearsals and could sing in tune, but he did not take part in concerts. They went to new places, saw new things, read new books (Carole reading aloud), met more frequently with their families and grandchildren – it was good for the grandchildren to see John and to know that, in spite of his mental and physical infirmities, he enjoyed life. They went on several holidays together – the Canaries, the Greek Islands, a cruise to the land of the midnight sun – and all of these trips John relished. He loved sitting in the sun.
As time went on, John developed amyotrophic lateral sclerosis, which is a slow creeping paralysis. He was now failing fast, and one by one his muscular controls went, including continence and the ability to chew and swallow. He was at home all this time. The Macmillan and local hospice nurses came daily, and John’s son and two daughters (one of whom was a nurse) visited regularly. With their support, Carole managed well, and they were deeply happy. He knew she was always there and, although John had lost the ability to express himself through words and sentences, he spoke with his eyes, which followed her everywhere. Almost until the end – or possibly right up to the end of his life – he retained understanding and responded to those around him. Human interaction is not dependent on speech, and I have even heard it said that language and speech make up only ten per cent of all human communication.
*
One day Carole told me an interesting story. They were both deeply religious people. Carole had found her faith during the trauma of the divorce from her first husband, John when he was eighteen and had been called up for military service during the Second World War. Apparently the sergeant called his unit together and said something like, ‘Right, you ’orrible men, tomorrow you go to France, and half of you may not come back. Those of you who feel you might be in need of some horizontal refreshment had better go and see the company doctor and have a talk about sex. Those of you who feel that death might be an uncomfortable experience had better go and have a talk with the padre. Company dismiss.’
John had a talk with the padre.
Both John and Carole were Lay Readers in the Church of England, which is how they had met in the first place. John had now reached the stage of his illness where he could not talk, or if he did try it was unintelligible gibberish. They had, throughout their marriage, said daily prayers together, and Carole continued the practice, although John could not join in. She told me that one morning – and she couldn’t say why – she suddenly chanted the Anglican Order for Morning Prayer, ‘O Lord, open thou our lips,’ on a G.
Immediately, in tune, and with clear enunciation, John responded:
And our mouth shall show forth thy praise.’
She caught her breath in astonishment, and continued:
‘O Lord, make speed to save us.’
He responded:
‘O Lord, make haste to help us.’
She continued the centuries-old chant until the conclusion:
‘Glory be to the Father, and to the Son, and to the Holy Ghost.’
He completed the ancient response:
As it was in the beginning, is now, and ever shall be: world without end. Amen.’
All this was accomplished with clear articulation, in a precise rhythm, and in tune.
And although John never spoke again, he sang the morning and evening responses every day until he neared the end.
Carole told the neurologist this story, and he said, ‘Well, of course. The back of his mind is still working, but the front’s gone wrong.’ After that, Carole and other members of the family always talked to John about things from the past, all the events of his life that they remembered, and although he could not speak it was clear that he understood. At a shaggy-dog story his brother had been telling at every family gathering for years, John laughed until tears ran down his face.
About two years after the onset of the disease, Carole took John on holiday, and on the return journey he started to choke. He had not eaten or drunk anything for several hours and he was choking on his own saliva.
Carole took him directly to hospital and his lungs were aspirated. She was told that his glottis had ceased to function. The glottis is the muscle that, by reflex action, covers the windpipe on the instant of swallowing so that food is directed into the stomach. If it does not work, any food or fluid or saliva will pass directly into the lungs. The patient will either choke, or die of starvation or dehydration, or a massive infection will set up in the lungs and overwhelm the body.
Carole stayed with her husband, expecting it to be the end. John’s lungs had been aspirated and he had been given morphine and was comfortable. Carole expected to sit with him until he died. However, the staff nurse came to him and started to insert a naso-gastric tube through which he could be fed artificially. Carole was watching. It is not easy to insert a naso-gastric tube, even under the most auspicious circumstances, with a patient who is conscious and fully co-operative. Usually, it is best to give the patient a boiled sweet and tell him to suck and swallow all the time so that the glottis is almost continuously covering the trachea. But John had no control over his body and therefore did not have the ability to suck.
The tube has to be inserted into the nose and pushed downwards towards the stomach. It is best if the head is arched backwards, which to some extent straightens out the passage. The tube will go through the nose and down fairly easily for about the first third of the passage, but if there is no glottal reflex, a mass of soft tissue will be encountered and the tube may very easily go down the trachea into the lungs. This is very distressing to the patient.
Carole watched the staff nurse try this, with no success. She withdrew the tube and Carole breathed a sigh of relief. But when the nurse attempted it a second time, Carole said, ‘This is not going to work, is it?’
‘We have to make three attempts to pass a naso-gastric tube before we can say it cannot be done.’
‘And what if I say “no”?’
‘I would say “Thank God”.’
‘That is what I do say, now. It is not going to work, and I am not going to see him put through any more. I will take him home to die.’
The nurse breathed a great sigh of relief, and for the first time Carole looked closely at her. She had been so concentrated on her husband that she had not noticed the nurse, but with the long shuddering sigh and the murmured, ‘Thank God for that’, Carole looked at her face. The woman looked distraught. Carole said softly, ‘What’s the matter?’
The nurse replied, ‘I have three other patients here and none of them can swallow, and I can’t get a tube down any of them. I’ve tried, and I have to try again, and then again a third time, and I have other patients to look after.’
Carole spoke to her about what she had said – three attempts? Why, and what did that mean? Apparently, if a patient cannot swallow, artificial feeding must be started. If three attempts are unsuccessful, then a tube will be inserted under anaesthetic, with scanning equipment, or a feed-peg could be introduced into the stomach through the abdominal wall.
Carole asked, ‘Do you mean that for all patients, whatever their condition, three attempts must be made? Is the rule inflexible?’
Apparently, it was.
I was aghast when I heard this. Surely no doctor would be fool enough to issue a blanket rule covering all patients. No experienced nurse would attempt a distressing procedure three times on a dying patient without discussing with the doctor the course of action, or inaction, most appropriate. Where did the rule come from? Carole did not know. One can only assume that the rule came from the hospital authorities, or perhaps even some government guideline issued by bureaucrats who are not trained in medicine or nursing. Apparently, the nurse told Carole, the rule had been issued in order to offset any accusat
ions about not feeding – in other words, starving patients who could not swallow. This is defensive medicine again – a curse destroying good medical practice.
Carole took John home. It was a very difficult decision, because she knew that at home he would have no food or drink, and would die, whereas if he remained in hospital he could be fed artificially. But he was dying anyway, and had said that he did not want to die in hospital. They had discussed this over the two years they were given in which to contemplate his end. But still she hesitated. It was only with the help and support of John’s son and daughters that they jointly decided to take him home.
The Integrated Care Pathway (ICP) for the care of the dying patient at home is based on studies showing that more than half of all terminally ill patients express the wish to die at home. It started as a pilot scheme, set up by the Liverpool Hospitals, to facilitate rapid discharge from hospital and to make available multi-professional care at home. Families looking after the dying need help, and the pilot scheme proved such a success that it is now provided by all NHS trusts.
Carole signed all the necessary papers (of which there were many) and took John home. A team of medical, nursing and domiciliary help was provided by the hospital. Yet such is the lack of understanding in society that someone said to Carole:
‘Are you bringing him home to starve him to death?’
Carole was deeply shaken by this ignorant and cruel remark, but she collected herself sufficiently to reply: ‘No, I’m taking him home to allow him to go through the process of dying as comfortably and as gracefully as possible.’
John was discharged from hospital on 5th October, 2006, in the care of his family, the Macmillan nurses and the local GP. When they had received him home, the doctor asked the nurses what they wanted to prescribe. Then he turned to Carole and said, ‘They know far more about this than I do.’John could not swallow, and so drugs were given to suppress secretions so that he did not choke. The nurses showed Carole how to keep his mouth and throat moist with glycerine swabs, and many other details of palliative nursing.
Carole slept with him every night, which is the closest and sweetest communion two people can have. She said, ‘I lay beside him and held his hand. He was so relaxed, and I knew he was happy, and so I went to sleep.’
On the night of 15th October, John Lewis died. Carole told me, ‘I woke up at one o’clock, and I knew at once that something had happened. The engine had stopped. He looked the same, but he was not there. He was quite warm and peaceful, and I think he had just slipped away quietly whilst I slept, as though he didn’t want to disturb me. It was a beautiful experience. It was a beautiful death.’
She said nothing for quite a while, and then said ‘I had twelve perfect years with John, and in some ways the last two were the best of all. Now I can truly say “it is finished”.’
2007
THE LIFE FORCE
Leah had been my delightful neighbour for twenty-five years and I had always assumed that she was about ten years older than me. It was not until she broke her leg and went into hospital that I discovered she was thirty years older than me. Leah was a hundred and two.
Leah was a widow and lived alone in her flat, and she fell at about eleven o’clock at night. Somehow, God knows how, she managed to haul herself to the telephone and ring for an ambulance. Steve and Sandy, neighbours who held a key, were awakened by the noise of an ambulance team trying to get in to the building. Steve went with them into her flat and found Leah on the floor, covered in blood, with a trail leading across the carpet from where she had fallen. The break was a compound fracture of the tibia and fibula, about three inches above the ankle, and pieces of bone were sticking out of the flesh. Poor Steve, who is not used to that sort of thing, nearly collapsed, but he controlled himself and helped the men get Leah on to a stretcher. In hospital, the bones were realigned, the flesh wound sutured and the leg plastered from thigh to toe. No one expected her to live.
But Leah did live. When I first saw her in hospital, she was virtually immobile because of the weight of the plaster. She was uncomfortable, certainly, but not in pain. She had a corner bed by the window. This was in June 2007. She sighed wistfully. ‘I hope this is not the end. Life is so beautiful, so interesting, so exciting. I don’t want it to end.’ In the year that followed, that was the only time, as far as I know, that she mentioned the possibility of death.
I reflected that, if she had not managed to haul herself across the floor to the telephone, she would undoubtedly have died during the night. Numbness, caused by shock and blood loss, would have engulfed her, and she would have drifted away before the morning light. I wondered what suffering lay ahead for her, what she could have spared herself within a night of fading consciousness. She knew her age; had she not anticipated death? But that is not the way our instincts work. Self-preservation is the first of the primary instincts, so Leah had made a superhuman effort to reach the telephone and seek medical help.
Leah’s husband, Alex, had been the artistic director for scores of major films between 1930 and 1975. He had worked all over the world with directors such as David Lean, Alexander Korda, Roman Polanski and Alfred Hitchcock. Leah had frequently accompanied him on location, and met many of the great film personalities of the period.
She told me that her biggest headache had been keeping Alex tidy and presentable, because he never cared a scrap about his appearance, and only wanted to wear old and comfortable clothes. ‘I knitted him a cardigan once, and after that he wouldn’t wear a jacket. The only things he wanted were these cardigans. I must have knitted dozens of them. They looked quite smart for a few days, but I don’t know what he did to them, because after a fortnight they looked dreadful – all out of shape, buttons pulled off, holes in the elbows – I could never understand how he managed it. The worst part was the carbon and charcoal from the sketches and drawings. If he wanted to smear something, or blend shades, he wouldn’t use a cloth like anyone else would. No, not him – he would grab the bottom of his cardigan and rub the drawing with that. No wonder his clothes were in such a state!’
She told me that they were asked to meet a new director. ‘We were told it was just an informal meeting one evening, so Alex went directly from work. I arrived from home and got there first. I saw at once that it was just about the smartest, most sophisticated cocktail party that film people can put on. Everyone was dressed to the nines, trying to outshine everyone else, the way they do, you know. It was all very pleasant. But when Alex arrived I nearly died of embarrassment. You’ve never seen such a sight – he looked worse than usual. One side of his cardigan was hanging down to his knees, the other side was up around his waist and it was covered in carbon and charcoal. There was a hole in his trousers. I can’t imagine how he had managed to tear his trousers; they weren’t like that when he went out in the morning. But he didn’t seem to have the slightest idea of how he looked compared to all the other smart people. He went around greeting everyone, charming, affable, friendly. People always liked him. You couldn’t help liking him.’
She sighed, and a dreamy look came into her eyes.
‘I’ve been a widow for thirty-two years, but I would never marry again. I’ve had a couple of offers; but no, not after a man like Alex.’
Another time she said, ‘When your husband dies, life changes utterly – everything changes. No one wants to be bothered with a widow. Invitations stop. Friends melt away. It’s when you begin to know who your true friends are. I had to start all over again, with a new life and new friends.’
But Leah was not just the wife of a successful artistic director. She was a remarkable woman in her own right and had scores of friends. I was not the only one who enjoyed visiting her in hospital. She sat up in bed, or on a chair, knitting for anyone who wanted anything knitted – indeed, I have a jacket and my husband has two jumpers from this period! I looked around at the other old ladies in the ward and she seemed to be the youngest of them all. She was sitting upright, her back unsupported,
her eyes bright, her skin clear, her hair nicely arranged – one would have thought she was a sprightly eighty-year-old. It was a joy to visit her, mainly because she was so interested in everything you were doing, and her memory was phenomenal. Most old people have short-term memory loss. Not Leah. She wanted to know the outcome of something I had told her during the last visit, of which she had remembered every detail. I told her I was going on a cycling holiday with my grandson, and when I next saw her, her first words were, ‘How did it go? Did you have fun? You were in the Cotswolds, weren’t you?’
Everything interested her, and she remembered things I had forgotten myself. And as for Scrabble! It was humiliating. I played many games with her and she beat me every time. In fact, she didn’t simply win; she wiped the floor with me. My husband played a couple of games with her, but then announced that he wouldn’t play any more because he didn’t like Scrabble. Men are not very good losers …
Leah was a Jew, and the rest of her family was in Israel. She was obviously much loved because her daughter, who was seventy-eight, with a husband of eighty, and her grandchildren, in their forties and fifties, came to England regularly with their children, or phoned her every day from Israel. She was not one of those tragic figures, of whom I have seen so many, who are left entirely alone in their old age. Her family was very good to her, right until the end.
In the Midst of Life Page 29