by Sue Black
Since most of us are products of a culture and era where nobody likes to discuss death in case it encourages her to visit, it can be difficult to know what our loved ones want to happen when their time comes, and indeed how we should go about getting ready for that. My husband, Tom, and I often used to talk about which of our four parents we thought would go first and who would outlive the rest, joking that the creaking gate always hangs the longest. But this was no morbid parlour game: it was an attempt to plan for the management of elderly lives in such a way as to maintain dignity and independence for as long as possible. In the event our great predictions were totally wrong. The one we thought would go first, my father, outlasted all the others by quite a few years – and even he would have admitted that only the good die young.
Did I fear my parents’ deaths? In truth, I don’t know. I think that, beyond being concerned about what dying might entail for them, I was not preoccupied by the prospect of their actual deaths or of them being dead. I saw their demise as an inevitability for which pragmatic planning was essential. I don’t intend to sound cold – I adored them both and would dearly have loved them to have lived the longest possible healthy and happy lives – but as death is a certainty, we need to be prepared for it.
My mother took ill rather suddenly. I was teaching police in a week-long training programme when a call came through from my father to alert me that she had been taken into hospital. As I’d expected, he was totally unhelpful in terms of being able to give me any real information. I finished my part of the programme and drove from Dundee to Inverness. The A9, bogged down by lorries, caravans and tourists, can be a long, lonely and frustrating road when you need to be at the other end of it in a hurry without risking licence and life.
When I arrived on the ward my mother’s first words to me were ‘You came.’ She had always been afraid that if her health failed nobody would want to take care of her and that she would be left alone. Having spent her entire life looking after other people – her aunts and uncles as she grew up, her husband and then her own family – she placed such little faith in her own value that she was unable to accept how much of a role model she was to us all. Now it was my job to look after her. She had suffered from hepatitis as a young woman and her liver was now slowly shutting down. Other organs were also failing; ascites, an accumulation of fluid in the peritoneal cavity, was becoming a problem and increased levels of bilirubin were producing jaundice. At her age, my mother was not going to recover.
She had never managed to make the transition comfortably from the mother-child relationship to its mother-adult daughter phase and we rarely held deep grown-up conversations. As a result, she really knew little about me, found me impenetrable at times and was therefore reluctant to share either her fears or her hopes. Ours was not a talkative, open and sharing family in general and my mother would have found it embarrassing to discuss her personal needs with anyone. Teenie and Willie had done a tremendous job with the little girl who had lost both her parents but, having been so sheltered and cosseted, she grew into a very dependent woman. I, on the other hand, had inherited my father’s and grandmother’s no-nonsense, independent approach to life and I was conscious that my mother found me hard to get close to and to understand. But she also knew that when things were bad, she could always turn to me as I would be logical and practical and I would cope.
Now, faced with her rapidly deteriorating health, I felt that she would not wish me to probe into what she might or might not want me to do for her. For her part, she expressed no desire to endure any medical interventions that might have postponed her decline and did not ask me to help her prolong her life. It seemed my mother had accepted that her time had come and had found a personal accommodation with it that appeared not to dwell on either regret or unrealistic expectation. My instinct was that, as she had so often done in the past, she was putting me in control of decision-making, this time for what would be the remainder of her life. My father and my sister were relieved, as neither wished to take on the responsibility. I undertook to do what I could to manage her dying and, ultimately, her death and the necessary rituals. I did it willingly, though with a heavy heart, and proudly, as the last service a grateful daughter could perform in this life for a genuinely kind and loving mother.
I remember the relief on the house doctor’s face when I stated very firmly to him that I did not want my mother to be resuscitated should the need arise, or to be placed on a drip. Nor did I want her listed on a transplant register. All these were notional lifelines the registrar was duty-bound to offer families as a last vestige of hope, even though, in reality, as we both knew, there was no realistic hope. The only effect any of them could have had would have been to extend my mother’s dying. To use an organ that could have profoundly benefited a younger person would have been unconscionable for both of us. This was something of which I was certain because my mother had in the past voiced the view that, with organs in such short supply, transplanting them into old people was a waste.
I did manage to get her home to her own bed for just one night before she died, but it took a great deal out of her and distressed her terribly. She was horrified that she had been catheterised and needed help to cope. I remember asking her whether, if the tables were turned and it was me who needed assistance, she would do this for me. The question was brushed away with irritation – of course she would. She was forced to concede, however unwillingly, that sometimes the roles of parent and child need to be reversed. When I got my mother back to the hospital the next day, it was clear she was not ever going to be able to go home again. She needed a level of palliative care that only the hospital could give her, or so the culture of our health system led me to believe. In any event, I allowed her death to be medicalised, and left the doctors and nurses to perform the intimate tasks she would have hated being done by anyone, let alone strangers.
I may have been broadly in charge of the decisions and directives passed on to the medical team, but it was they who would dictate the pace of her dying and control the level of her engagement with the world around her. In my moments of dark reflection, I chastise myself for those hours she spent alone in the hospital. Friends would visit early on but gradually they fell away as she became less responsive. I believe she would rather have been at home, where she would have been loved and cared for in her final days, but my father could never have coped and there was not the same level of home nursing available then as there is today.
In our busy lives we try to juggle what we think we should be doing with what we must do and what we want to do. In the end, most of us will probably feel that we didn’t achieve enough or should have done things differently. Yes, I had a husband, children and a demanding job over a hundred miles away, but I had only one mother – a mother who had always lacked self-esteem and, although kind of spirit and heart, was fundamentally sad, lonely and unfulfilled. So I regret simply accepting it as the ‘norm’ that she would be cared for in a hospital and that, in my absence, she might be visited by others. Would I do it differently today? Yes, I probably would, but that perspective comes with hindsight and experience. As the older generation of my family have died, one by one, I think I have got better at managing the process with them. Practice makes perfect, or so they say.
There were only five weekends between my mother’s first admission to hospital and her death and my daughters and I spent every one of those with her in a tight little family bubble, cramming in as much time as possible with her while we could. On our penultimate visit she was slipping into a coma. I told her we would be back again the following Saturday and that she should hold on until then, although I had little faith that she would. Such arrogance to expect her to arrange her dying timetable around us! At the time, I felt it was the right thing to say, to encourage her to have something to look forward to (utterly insane: the woman was dying), but I wonder if I merely extended her suffering and loneliness. I shiver now at my thoughtlessness. I am ashamed that I allowed my dogmatic personal
ity to assume control in the expectation that she would simply comply; that I took it for granted there was some benefit to her when, in reality, there was none. Maybe I am being hard on myself, but nobody will ever convince me that she did not hang on for us to visit her one last time when she could have been at peace sooner.
A hospital ward, devoid of warmth, love, character and memories, can be such a sterile environment for the dying and their loved ones to try to prepare themselves for the most personal, private and irreversible of moments. The next Saturday, the last time I saw my mother alive, my two youngest daughters and I spent the afternoon alone with her, largely uninterrupted. I was certain this would be their final chance to say goodbye and I didn’t want them to grow up regretting, as I had always done, the loss of those precious last hours with their grandmother.
My mother was in a side room on her own, now in a morphine-induced coma and no longer with us. Or was she? The auxiliary nurse taking care of her final needs was simply going through the motions. She wasn’t in any way cruel or neglectful, but she showed no empathy or understanding for either my mother or for us. She had a job to do and we were almost irrelevant.
Our middle daughter Grace, who was twelve at the time, was incandescent with rage over such a lack of compassion. Her anger and indignation never left her – indeed, it was instrumental in our clever little monkey of a daughter becoming a nurse herself. Experiences of death have the power to alter attitudes and even to change the course of lives. Grace has buckets of understanding and a huge heart, qualities that make her exactly the kind of nurse her grandmother should have had in her last hours on this earth – the kind of nurse every family is entitled to expect. She is not afraid to sit and hold a patient’s hand in their final moments, offering comfort and reassurance untainted by falsehoods. Isn’t that what we would all want when we are ill, in pain or dying – kindness and honesty? It does not surprise me that recently she has been considering specialising in palliative care. It will be a heartbreaking road, if she chooses to take it, but I know she would fight for the dignity of every single patient in her care. Her grandmother would be as proud of her as we are. Yes, Grace is our own angel of mercy – even if she does currently have blue hair, which must terrify some of her poor patients.
Research using electroencephalograms (EEG) suggests that of all our senses, hearing is the last to go when we are unconscious or dying. This is why palliative care professionals are very cautious about what is said in the vicinity of a patient and why families are encouraged to talk to those who appear comatose. That last weekend, we decided that Granny should not leave this world hearing nothing but silence punctuated by distant whispers and tears. We would not be a family that moped, we would be the Von Trapp family: we would sing.
Even though recalling her death is still sad and painful, the memory of that bizarre last day still makes the girls laugh. We went through our repertoire of hits from Disney films, a range of Christmas songs (despite it being the height of summer), all my mother’s favourites and one or two old-fashioned Scottish ditties. Every time a nurse or doctor came into the room they smiled and shook their heads at the sight of the three of us lolling around belting out songs in inglorious disharmony. The look on their faces would catapult us into further hysterical merriment and the room filled with love, laughter, light and warmth as well as caterwauling. Hospitals are terribly unhealthy places for the soul and bringing more laughter into them can only be a good thing. There were no ministrations from clergymen, no grief-stricken friends – just ‘her girls’ having a fun time, keeping her company and simply being human.
Death is, after all, a normal part of life and sometimes in Western cultures we hide it away when maybe what we need to do is to embrace it and celebrate it. Sometimes, with the best of intentions, we try to shield our children from harsh realities when perhaps we could be preparing them to face the events they will need to deal with in the future. I know that not everybody agrees with that philosophy, but it was important to me that my children were there, not only to say a proper goodbye to their grandmother but also so that, when it is their turn to attend to me and their father, they will know that it is OK to laugh and be silly and that we would rather have laughter and song than heartbreak and tears. Maybe some people would consider it disrespectful to belt out ‘The White Cliffs of Dover’ and ‘Ye Cannae Shove Yer Granny Aff a Bus’ round your mother’s deathbed, but I think she would have enjoyed it immensely.
After all the classics had been given an airing, we were exhausted. My mother had not moved an inch in the entire time we’d been there but we had held her hand, moistened her lips and combed her hair. It was when the time came to say our farewells that the tears inevitably came to the fore. When the girls had said their goodbyes, I asked them to give me just a moment on my own with my mother. But I found myself unable to utter a word. I couldn’t tell her that I loved her, that I would miss her, or even summon the words to thank her. Neither my mother nor my father ever told me they loved me, although I always knew they did. The expression of such sentiments had never been part of our family language, and to voice them now seemed just too alien to the strange, stiff-upper-lip attitude that set the tone for the way our family dealt with each other. Besides, I was afraid that if I did, I might start crying and never stop, and I did not want my daughters ever to see me distressed. My role was to be the strong one.
And so I simply said goodbye, and closed the door on her room, leaving her to make her final journey alone. I regret that decision more than anything. If I could, I would go back and change every single aspect of my farewell. While I will always feel that I should have been with her at the end, I fear that if we had stayed she would have continued to cling on to life for us. I had to let her go, and it seemed to me that it was only by departing that I could do so.
I had just walked into our house, only two hours later, when the hospital phoned with the news that my mother had died. How quickly had that happened? Had she just been waiting until we had gone to slip away? Or had she lain there alone for a while in the silence we left behind us? Perhaps she was glad there was silence finally and we had stopped all that dreadful singing. Somehow I doubt that. Had she been on her own in that hospital room or had a compassionate nurse sat with her in those last moments? Had the morphine just allowed her to pass away quietly and unconsciously?
I will never know the answers to those questions. All I can be sure of is that, though she wasn’t able to die in her own bed in her own home with her family around her, as she would have wished, we tried to do the best we could for her. I sincerely hope she understood that. Whatever plans or promises we make, illness and death have a habit of shifting the goalposts.
It can be harder than we think to be with someone when they die. You can maintain a round-the-clock vigil at the bedside of a dying loved one only for them to breathe their last when you are grabbing a couple of hours’ rest or have just popped out for a cup of coffee. Death works to her own timetable, not ours.
Tom and I allowed our girls to decide whether they wanted to see their grandmother one last time before her funeral. We didn’t want them to go through life afraid of the unknown or feeling that they had been denied this opportunity to help them accept her death. The three of them went into a judge-like huddle and resolved that they would all like to see her. Beth was a grown woman of twenty-three but Grace and Anna were only twelve and ten. The room at the funeral home was quiet and the coffin was open – memories of Uncle Willie came flooding back, but I am glad to report that I behaved this time.
I learned that day to have faith in the resilience, dignity and decorum of our daughters. As I stepped back to permit them their first personal encounter with death, they all commented on how terribly small their grandmother looked. It was, true to form, Anna who made the first move. The fearless little one who used to give her granny near heart failure by clambering to the top of the highest climbing frame in the wildlife park and waving enthusiastically at the people far below
on the ground, holding on with just one hand.
Anna leaned into the coffin, took hold of my mother’s hand and stroked it gently. No more was needed and no more was said. The touch of love that shows no fear of death. Granny had finished with dying, had died and was now dead – all very clear and distinct concepts in their minds. They were at ease with the finality. They know that the best memorial is a boxful of happy memories inside your head, and they know what a good death looks like.
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My father remained strangely detached in the aftermath of my mother’s death. He never offered to arrange anything, or took any responsibility – he just seemed almost passively to allow everything to happen around him. He and my mother had been married for fifty years and yet there appeared to be little grief in him. At the time I put this down to a combination of his innate stoicism and shock.
With hindsight, I believe the dementia that would soon emerge and consume his own life had already begun to take hold, and that my mother had been covering up the changes in him, making all the usual excuses for his forgetfulness and odd behaviour. At her funeral, a traditional, solemn affair, I think he just went through the motions and I am not sure now that he really understood what was going on. The telltale signs were there, but amid the distractions of the bureaucracy of death and our own grieving we just didn’t see them, or perhaps we chose not to. He offered no reminiscences, shed not a tear and everything for him seemed to be business as usual. After the service he chatted away to friends and family as if it were a wedding rather than the funeral of the woman with whom he’d shared his life.