She was so disappointed with herself over this tape – ‘I wasn’t good,’ she said. Hunter told her it wasn’t a question of being ‘good’, it hadn’t been meant as a performance, but she insists she hadn’t done her thoughts justice. He told her he’d make more tapes, this would be the initial one, to build on, but another was never made.
From that moment on Marion’s condition began to deteriorate. I noticed it the very next day. It was a sunny afternoon but she didn’t want to go out. She didn’t want to get dressed either. Frances had forced herself to go to work for a couple of hours and we sat, for once, in the sitting-room. Marion was in the wing chair, its seat padded with an air-cushion, and, though it was not cold, she had wanted the fire lit. It was one of those fake gas fires (which look like coal burning), newly installed in the Victorian fireplace. ‘At least I’ve seen the fire on,’ she said. There was a pause followed by, ‘But I’ll never see Derby.’ She was almost in tears, but I couldn’t help laughing. ‘Derby!’ I said. ‘For God’s sake.’ But she’d been watching Pride and Prejudice and longed to visit Derby, where it was made. She laughed herself, but said it was stupid realisations like that which brought home to her most forcefully that she was really dying.
It was a strange afternoon. I read bits of the Guardian to her – she still loved newspapers but no longer actually read much of them – but she wasn’t concentrating. ‘I’ll never know the end of all the stories,’ she suddenly said. ‘I’ll never know what happens to the young ones. What will they become?’ There was the same breaking of her voice as on the tape. Her three nephews and four nieces were so very dear to her. Maybe if she’d had children of her own she would not have had the time or interest to have been such an involved aunt, but, if so, her loss had been their gain. My children had seen the most of her because when they were growing up she had lived in our street, and she’d been intimately acquainted with their troubles and triumphs. She talked to them for hours, and they talked back (or in other words argued ferociously with her), and she never grew tired of them. And now, dying, she worried about them and couldn’t bear not to know their futures. All I could think to reply was that nobody ever dies knowing the ends of all the stories.
She rarely referred directly to the future, to a time after her own death, but that afternoon she did. As I gave her a mug of tea she said, ‘Do you think Frances will be all right?’ Quickly, much too quickly, much too emphatically, I said that of course she would, she was young and attractive, she had a strong personality, and in time I had no doubt at all she would rebuild her life. ‘Good,’ Marion said, nodding, and then, ‘Mind, I don’t want her or Annabel going to pieces when this is all over.’ She paused, and for the first time that afternoon she laughed. ‘Well, at first they can, of course, but then no more weeping and wailing – it’s stupid to carry on.’ Extravagant tears always destroyed her. She thought that, contrary to popular belief, there was no release to be found in ‘a good cry’. The times, the very few times, when she herself cried were awful because she so hated losing self-control. Crying was a messy indulgence she felt better without. ‘It’s no good crying’ was an edict built into the very fabric of her life, echoing her mother’s ‘If I start crying, I might never stop’. Crying, she found, weakened her, made her feel ill. And other people’s tears were a burden, because they made her feel she must comfort them and this used up what energy she had. If people were going to cry, she’d rather they didn’t do it in front of her. These were the sort of visitors she wished would stay away.
She didn’t want visits from those who were afraid, either. She sensed their fear and she didn’t like it. It was better they didn’t come. In fact, only a couple of friends reacted like this and her disappointment in them was far outweighed by the gratitude she felt when others were overwhelmingly generous and thoughtful. One young man, who had once been part of her social work team, invited her for lunch to his home and, knowing she would not be able to manage on her own, invited not just Frances too but me as well, and Annabel who was visiting her, and, because he was acting as chauffeur, Hunter. Her friend and his partner gave us a splendid lunch and devoted themselves utterly to Marion. She was so happy, that day, actually to be out to lunch accompanied by a (rather embarrassingly large) selection of ‘loved ones’. It made dying so much less boring. Nobody flinched at the sight of her swollen face; nobody shuddered at the ugly neck wound; everyone was patient with her slow and slightly slurred speech.
This was almost but not quite the last occasion upon which she left home. A few days later, she went to Leighton Buzzard to visit Annabel and Roger, an expedition of heroic proportions. She wasn’t really fit enough and right up to the last minute there were doubts as to whether she would be able to go. Every step she took was an almighty effort and she was mentally not exactly confused so much as lacking concentration. It was over an hour’s drive there, over an hour back – too much for someone who had made no car journey longer than twenty minutes for months. But she was adamant that she wanted to go. She wanted to see Roger, who was confined to a wheelchair and for whom all travel was difficult, making it almost impossible for him to come to her, and she wanted to be in her twin’s home one last time. Hunter took her and Frances in our car. The outing was more or less a disaster, straining all involved and leaving them on the edge of those tears Marion did not want. But she herself was said to be largely oblivious to the strain – she slept a great deal, even during lunch – and pronounced herself delighted with her day out. She’d achieved what she wanted, a little goal not on the Dennis Potter scale but nevertheless an achievement.
She never left her house again, never attempted the stairs. It was as if a drawbridge had been pulled up. At the beginning of November, we settled down for the final siege.
VII
THE DAY AFTER the exhausting outing to Leighton Buzzard, Marion stayed in bed, to recover. Arriving in the morning to see her there, comfortably settled on the pillows, I felt such relief, but it was a guilty relief. It is so much easier for carers if the invalid is lying all neat and tidy in bed. It is when they are struggling to haul themselves up, straining to stand, to move about in any way, that their sickness becomes obvious and pitiful. Make them stay in bed and all kinds of pretences can be maintained. So many times I knew I’d urged Marion to stay in bed, to rest, to have a little sleep, thinking not so much that it would be in her best interests as in my own. But she had resisted – what was left of life was far too precious to waste lying in bed (and she knew in any case she’d be unable to move from it soon).
She had always insisted on getting properly dressed, when I had promoted the advantages of a dressing-gown, dreading for myself, as well as her, the ordeal of putting on clothes, with all the twisting and turning and stretching and bending of her poor limbs. Stay in bed, stay in your nightdress, stay still … and now she had little choice. Her bedroom became her world for most of the day. It was a small, square room at the back of the house, a room that was to have been her study when she and Frances moved in, just before her illness was diagnosed. There were two bedrooms upstairs but, once she could no longer manage the stairs, the study became her bedroom. Her bed took up a third of the space. There was a special mattress on it, which overlapped the base slightly and made the bed look bigger than it was, and a special wedge-shaped pillow on top of the ordinary ones. A table next to the bed, under the window, held all the many drugs she took, including the ever-available liquid morphine. On the wall above her head was a large framed old map of Cumberland and, facing her, taking up nearly all of the wall, an enormous oil painting of Hyde Park at a point near the Albert Memorial, originally given to me by the friend who’d painted it. She liked the colours rather than what was depicted. It was an autumn scene, all strong oranges and yellows and browns, the paint slapped on in huge lumps. It would have driven me crazy to have to look at this all day, but she found it somehow cheerful (and also liked the idea of having saved it from being sent to a jumble sale after I’d got tired of it).
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br /> There wasn’t really room for an armchair, but we brought one into the bedroom so that we could sit comfortably during the long hours we were now going to be there. The chair faced the bed and the window, which was covered with a yellow blind. Most of the time the blind was down, since there was nothing much to see outside except the dismal backyards, and the light filtered through well enough. At least it was quiet there, which was lucky because noise of any sort had become anathema to Marion. She wanted everything to be peaceful and even the doorbell, or the crash of something dropped in another room, startled her. She couldn’t cope with anything that violated the calm she liked, including the arrival of new people.
New people, unfortunately, had to be brought into this small room all the time. She had developed a pressure sore which needed to be dressed daily, so we were now on the district nurse’s rota, and we had a Macmillan nurse overseeing all the treatment. The nurses were kind and efficient, but Marion found it hard to accept any of them. It was curious, Marion’s slight antipathy towards nurses in general. Her mother had always wanted her to be a nurse – Marion was to be a nurse, Annabel a teacher. But quite apart from the fact that nursing had never appealed to her (maybe she’d had enough, in effect nursing her own father during her adolescence) Marion would have been quite unsuited to conforming in the way the nursing profession requires. She would not have taken kindly to fitting into the hierarchy and working under sisters and matrons. There was an appealingly anarchic streak in her which showed itself in lots of trivial but telling ways, and which, if she had grown up in a different family and a different environment, could well have made her active politically.
This revealed itself quite early. She was never cowed by authority, though she defied it only in small ways and usually secretively. Once, enraged because her particular school was to celebrate the Queen’s coronation not with a party, like all the other schools, but with the planting of some shrubs in the grounds, she wrote a letter of protest to the local Director of Education, asking him if he was aware of this unfairness, and pushed it through his letterbox at night. When the headmistress subsequently announced a change of plan, and said there would be a party after all, Marion claimed this as a personal victory. It gave her great pleasure to think how she’d challenged the headmistress (even if the headmistress was unaware of it).
This side of her character had made her a very useful and popular aunt. I always refused to write notes to teachers asking for my children to be excused anything at all if, in fact, they had no real excuse – certainly not, Mummy was much too law-abiding. But Marion would, without my knowing. My youngest only had to drape her loving arms round her aunt’s neck and whimper that she hated games and hated the teacher and wished she could get out of the next horrible games afternoon, for Marion to say: ‘Give me a bit of paper and a pen, petal.’ Then she’d write a preposterous note, claiming some incomprehensible ailment as an excuse for my daughter not to be able to do games, and say, ‘That should do it.’ Apparently it always did. Maybe the teachers simply couldn’t decipher Marion’s awful handwriting. She’d join in a conspiracy with the children against teachers, expressing contempt for the majority of them, and finding few in her experience as a social worker with much understanding of children’s backgrounds. Nurses were not as bad, but she was still suspicious of them and had no awe (as her mother had) of their qualifications. It was a case of ‘So she’s a teacher, so what?’ and ‘So she’s a nurse, who cares?’
She would have preferred us to manage without nurses. The hardest for her to accept were the night-duty nurses who arrived to put her to bed (even though she was in bed most of the day, this still involved a routine of checking the pressure sore, remaking the bed and helping her to the lavatory). Theoretically, it should have been a boon, having these skilled helpers, but it wasn’t. As with most such services provided by the local authority, there was no knowing when the help would arrive. We understood this and were grateful all the same, but gratitude could soon vanish. Going to answer the door on the second night, at about ten o’clock, I heard loud laughter and shouting on the doorstep. Well, why shouldn’t nurses laugh and shout outside? But these two didn’t stop as they came charging in. They rushed past me, clattering noisily up the stairs and calling out, ‘Come to do the patient – where is she?’ The tranquil atmosphere was shattered and tension of a kind we had tried so hard, and so successfully, to banish seemed to blast through the flat like hot air.
Frances was waiting at the top of the stairs, finger to her lips. ‘Sssh!’ she pleaded. The nurses stopped. ‘Come to do the patient,’ one said. ‘I’m Frances, Marion’s carer,’ Frances whispered. ‘Who are you?’ ‘Nurses, come to do the patient.’ No smile, no lowering of the voice, no names. ‘Got to get on with it,’ one said. ‘Others to get round.’ Frances showed them into the bedroom and came out in tears a couple of minutes later. She hated to see how rough they were, hauling Marion up without saying more than the now inevitable ‘We’re nurses, come to do you.’ They were so big and powerful, more like bouncers than nurses, but who were we to criticise and demand some latter-day Florence Nightingale? We felt not just humiliated and brushed aside but curiously ashamed, as though we had let Marion down by allowing this invasion. We should have stood up to them, insisted on some personal contact however short the time, insisted on their approaching Marion quietly and gently. But we didn’t. Instead, we simply cancelled that particular service. We said we’d manage, which we did for a little while longer.
When the nights became a problem, we switched to Marie Curie nurses. They were different – quiet, friendly, composed, they slipped easily into the atmosphere we’d established. But even so, Marion didn’t want them. When, on the first night, the Marie Curie nurse settled down in the armchair for the night, Marion was appalled and in the morning told Frances to tell the nurse not to come again – ‘Say thank you, but don’t come back, we’ll manage.’ Frances, in the most tactful way possible, had to say that no, she could not manage at night, not any more. It was too hard. The broken nights, answering Marion’s every call to be taken to the lavatory, on top of the exhaustion of grief, were rapidly bringing her to breaking point. She had to have some sleep. Marion accepted this, as she accepted everything, with a good grace but she was not pleased. She wanted privacy. She hated strangers, however kind, doing anything for her. But, on the other hand, she also hated the idea of having to go into the hospice to die and she had enough commonsense to realise that if Frances cracked there would be no alternative.
It was strange, her deep aversion to the hospice which had served her so well, but she was emphatic: she wanted to die at home surrounded by her loved ones and her own things. She’d always had strong ideas about this. Everyone, she believed, should be able to die at home, and no one should die alone. It had caused her absolute agony of mind when her mother had died in the public ward of a mental hospital with demented cries all around, but no family beside her (even though Marion and I had both been with her up to six hours before). She was passionate about how wrong this was, and we had promised to respect her wishes. But in the first days of November I began to wonder if this was another promise I’d fail to keep, like the promise to my father that he’d never be put into a home. I could see circumstances changing, the strain becoming intolerable if her dying was protracted. I was staying the night by then, sleeping in an upstairs room above Marion’s, alert to the sound of the buzzer the nurse would press when she needed assistance (it took two people to help Marion to the lavatory – one nurse could no longer manage on her own). It made sense for me to be the one who got up. Frances, upon whom the burden was by far the greatest, needed more sleep. Sometimes the buzzer sounded only once, sometimes twice. On the nights when, in spite of our help, Marion fell, it could take half an hour or more to get her back into bed. She would crouch in a heap on the floor saying, ‘Wait, wait,’ and we learned, the nurse and I, not to try to lift her until she was ready. Then, with a great heave and massive determination on Mario
n’s part, it would be done. All this struggle could have been avoided if she had agreed to use a commode (which towards the very end she had to), but she wouldn’t. Her wish was to drag herself to the proper lavatory, whatever ordeal it put her through, and we had to support her in this. No one thought of refusing. Force is not something you use against the dying.
But this night-time ritual was endlessly distressing. Distressing and also bewildering. Again and again, at two or three in the morning, watching Marion perched on the end of the bed gathering her feeble remaining strength to try to stand and then walk, I wondered why she was doing this. What pushed her on with this compulsion not to give up? Why didn’t she just lie back on her pillows and let go? The room was so quiet. Her breathing was so heavy it filled the silence. Her eyes were shut, the effort clearly visible in her expression. Such determination for what? The mattress made little squeaking noises as she manoeuvred herself off it. ‘Sounds like a kitten,’ she said, smiling. Minutes went by. The nurse was completely relaxed and patient. She didn’t speak, just patted Marion’s hand, quite content to be directed by her. My hands were cold when, once Marion was finally on her feet, I took one arm and the nurse the other. ‘Cold hands, warm heart,’ Marion said, and laughed, delighted to be upright, delighted with another of her mother’s little clichés. Slowly, very slowly we shuffled across the three or four feet to the door, knowing that if she sank to her knees we would never manage to support her and once she was on the floor we’d have to start all over again from a much worse position. If we did get her to the door without a collapse, she never fell on the rest of the way. A handrail had been fitted onto the wall between bedroom and bathroom and in the lavatory itself there was now a specially raised seat with handrails either side. The relief of reaching it was overwhelming and, oddly, the journey back always passed without incident.
Precious Lives Page 17