by Sue Black
If my mother’s dying days were mercifully brief, my father’s would be painfully protracted and, given a choice, he would certainly have opted for a different final journey. In fact, if he’d known what was coming his way, I have little doubt that this no-nonsense Scot with no time for sentimentality would have gone out into the woods behind the family house with his shotgun and ended it all. I remember often thinking that the kindest way for him to go would be to fall off the roof when he was up there trying to fix a slate. But was it difficult for him or just difficult for the rest of us? How much greater is the burden of grief for those who have to watch Alzheimer’s rob someone of their memories, and most of their very identity, than it is for those who have them stolen?
Left to his own devices, what we thought of as abnormal behaviour, exposed by the absence of my mother’s interventions, became his reality. He cursed the boys, figments of his imagination, who had come into the house and stolen his keys; he told our girls to keep quiet in case they woke their grandmother, who had been dead by this time for over a year. All of these signs creep up on you, and initially you make allowances and adjustments for them.
We rarely plan for dementia, we just manage it. Tom and I met each new problem with new solutions. My parents had lived in the family home since 1955 and although we had tried on many occasions to get them to downsize, my father would always say, with a twinkle in his eye, that it would be our job to clear the house when they’d gone. We could not move him now. We organised a carer to come in three times a day to make sure he ate properly – we had food delivered that just needed to be heated up – and that he was safe and warm. We made the 230-mile round trip to Inverness almost every weekend to clean and maintain the house, change his bed, do the laundry and shop.
It takes a crisis to force you to face reality and make some major and unpalatable decisions. This came one bitterly cold winter morning with a call from Northern Constabulary. Normally when the police ring me it is to talk about a case, but this time the business was personal: my father had been found outside a care home in his joggers and T-shirt at five o’clock in the morning, in temperatures of –10°C. The police had taken him into the care home, assuming this was where he’d come from, only to be told he wasn’t ‘one of theirs’. They warmed him up and fed him biscuits and coffee while they talked to him to try to find out who he was and where he lived. He clearly had enough presence of mind to take them to his house, where they found the door wide open and, in the kitchen, a list of telephone numbers pinned up on the kitchen wall by my ever-practical mother. That A9, known locally as the ‘road to hell’, doesn’t get any shorter, or the speed cameras any fewer, no matter how many times you go up and down it.
It was obvious that it was not safe for him to continue living on his own. The strong, stubborn man of my youth would have to be taken into care.
I remember, when I was very young, my mother’s aunt Lena going ‘doolally’ or ‘lally doo tap’, as my father described it. Her advanced dementia had taken her to Craig Dunain Hospital, where he would visit her every week. She was totally non-responsive and didn’t recognise him, yet this undemonstrative man would sit with her and talk at her for hours at a time, while she rocked backwards and forwards, gently rubbing her finger and thumb together incessantly. I asked him one day why he bothered and his answer, in which I heard echoes of his own mother, shocked me so much that I never forgot it. ‘How do we know she doesn’t hear us?’ he said. ‘How do we know that she isn’t just locked inside her head and simply can’t communicate? How do we know she isn’t lonely and scared?’ He wasn’t prepared to take that risk and so he visited to talk to her and keep her company at a time when my mother found Lena’s condition too upsetting to witness. It was a side of my father that took me completely by surprise. And so, when his own dementia came calling, I never once assumed that he wasn’t there, locked inside his own head, afraid and alone.
My father lived to almost eighty-five, and for the remainder of his years we watched as, very slowly, bit by bit, this six-foot giant of a man, his bristling military moustache, his bandy legs, his barrel chest and the voice that could stop traffic dwindled until, finally, he all but disappeared. With the ravages of the disease, some early distressing bouts of rage eventually gave way to placidity. We moved him to a care home five minutes’ down the road from us in Stonehaven, where my little family became his sole companions for nearly two years. It was too far for his old friends to travel, and he no longer remembered them anyway. Grace, our fledgling nurse, saw him the most as she took a part-time job in the home. We wondered if this work experience would put her off her choice of career but it seemed only to fuel her determination.
We had a good couple of summers and Christmases with him and, from a perhaps selfish point of view, those years gave us an opportunity to spend time with him that we would all cherish for ever. Time to chat, to listen to music with him, to sing and go out with the wheelchair he needed after falling and breaking his hip.
I would sit with him in the sunshine and hold his hand – a tactile demonstration of affection I could never have contemplated as a child. He loved the warmth of the sun and when we took him out into the garden he would turn his face up to it and bask contentedly like a cat. He clearly still derived tremendous pleasure from these activities, and from his Maltesers, ice cream and the odd little dram. The moustache would twitch after the first sip and rosy spots would appear on his cheeks. He did not seem to be in pain, he did not seem distressed and there was no doubt in my mind that he knew who we were because his face would light up when we came into the room.
Yet how the man he had been would have detested his dependency on others, including me. The nurses at his care home were genuinely fond of him because he was never any trouble and always had a twinkle in his eye and a smile for them, which was such a solace. Although none of us was ‘happy’ for him, he was safe, he was well cared for, he was loved, he was warm and clean, he was pain-free and he led a calm and peaceful existence. That said, it was still a soulless environment – functional, comfortable enough, but always clinical, never homely. My father would have called it ‘God’s waiting room’.
In the last year of his life he forgot how to walk and then how to speak. And then, slowly, he started to shut down. One day, as if he had decided that enough was enough, he stopped eating. Soon he stopped drinking. He metaphorically turned his face to the wall and just waited for the end to come. Maybe he was even inviting it, I don’t know. I had power of attorney for his health and gave the same instructions as I had given my mother’s doctors: he was not to be resuscitated, not to be put on a drip, just made comfortable, kept free of pain and allowed to die when he was ready.
When death did come for him it was not with violence but calmly, quietly and patiently, at a pace of which he would have approved and that perhaps he drove. Realising that time was short, Tom, Beth, Grace, Anna and I visited him on what turned out to be his last day. It seemed that, to all intents and purposes, he had simply decided to switch himself off. He lay curled on his side on the bed, not registering that there was anyone in the room with him. If he could hear us, he heard chatter, laughter and his favourite music – ‘Highland Cathedral’, performed by our girls’ school pipe band – on the CD player. He remained utterly motionless and non-responsive. He wouldn’t take any fluid, and the skin on his enormous hands, like bear paws, though warm, was as dry as fine paper.
When it was time for us to go for the night, I told him, as I had told my dying mother, that we were leaving, but would be back in the morning and he’d better still be there. Old habits do die hard. An unmistakable look of terror crossed his face and flashed out from those expressive, black eyes. I was stunned. My father had been virtually non-communicative for months. Beth gasped. She had seen what I had seen. I had not imagined it. ‘Mum, I don’t think you are going anywhere,’ she said. He had been right, all those years ago, to question our assumptions about Aunt Lena. He was still in there, locked in his own
silent world, unable or unwilling to communicate. Now, when it really mattered to him, he had found the strength to send out an SOS in the only way he could. He knew what was coming and he did not want to be alone.
As a child I had promised my grandmother I would be there for him when the time came, and evidently this was it. I reassured him that I was going home just to shower and change, and would be back within the hour. When I returned, Tom, Grace and Anna left; Beth chose to stay with me and her grandfather.
I don’t think my father was afraid to die, just anxious about dying alone. His mother had understood him so well. Beth and I sat in the dimly lit bedroom and talked and laughed and sang and cried. He made no response but we held those huge hands and he was never alone for a moment. If one of us left the room for a toilet break or to fetch coffee, the other stayed. He did not move a muscle. His hand never clasped around mine, his eyes never opened. There was absolutely no doubt that this night was going to be his last – everybody knew it, him included – but the atmosphere was one of peace.
In those wee small hours when the ghosts of a life visit for the last time, his breathing became shallow. I told him it was OK to go, that we were with him, that he was not on his own. His breathing slowed, slowed further, deepened and then stopped. I thought it was all over but then he took a few more shallow breaths. There was a short spell of agonal breathing – gasping, basically – before the sound of the death rattle, caused by mucus and fluid collecting in the back of the throat, where it can no longer be coughed away. Finally, the last gasp, nothing more than a brainstem reflex. Within a matter of seconds, when I saw the foam from his lungs appearing on his lips and nose, which meant there was no air left in them, I knew he was dead. It was as simple as that. No fuss, no distress, no pain, no hurry – a gradual giving out of power.
The huge physical and spiritual presence that had been a cornerstone of my life had slipped away from this world in what seemed like the flick of a light switch. A smaller, thinner shell remained but the presence had left the room. It was a strange sensation: I felt no attachment to this shell, because it was not him. My father was not his body, he was something very much more than that.
We opened the window to let his soul fly. If his mother was there to meet him, as she’d promised, I had no sense of it. I was not, of course surprised, but perhaps I was a little disappointed. Then we cried for a bit before settling ourselves down and getting on with what needed to be done. We fetched the nurse, who checked his pulse (we’d done that) and his breathing (we’d done that, too) and she confirmed a time of death – a good ten minutes later than when it actually happened, but that hardly mattered.
My father had technically died of old age. In days gone by, the cause might have been expressed on his death certificate in more poetic language but in the more banal medical vocabulary of today it was attributed, like so many others among the elderly, to acute stroke, cerebrovascular disease and dementia. I was there: he had no acute stroke. He probably did have some form of CVD (we can all expect to with age), but last time I read about it, dementia doesn’t kill you. It was simply his time, and he had chosen it.
I had, though, felt throughout his illness that Alzheimer’s was a cruel route to death. The long, drawn-out period he spent dying was hugely distressing for us all and, I suspect, for him, in those moments of clarity that probably visited him in the night when he was on his own. We felt we had begun the grieving process at least two years before he died, when we began to lose the man we knew. But in the end, he had a ‘good death’, just one that took too long to arrive. His time was up, he turned his face to the wall and he died peacefully with those who loved him by his side. Can it really get much better than that?
CHAPTER 5
Ashes to ashes
‘The measure of life is not its duration, but its donation’
Peter Marshall
pastor (1902–49)
My grandmother, Margaret Gunn, in Inverness in 1974.
IF THE WAY we support and comfort the dying is broadly similar across countries, cultures and belief systems, the same cannot be said for funerals. But whether we are talking about the Buddhist sky burials of Tibet – in which the body is returned to the earth by being chopped up into pieces and left on a mountaintop – the famous brightly coloured, noisy jazz processions of New Orleans or the more sombre occasions traditional to the UK, they all provide a reassuring template for mourners to follow at a time of raw emotion. These ceremonies are very important, not only in enabling families and communities to commemorate the lives of the deceased and bid them a public farewell, but also in bringing some solace to the bereaved by giving them a framework within which to ritualise their grief, whether that involves expressing it or masking it.
The stark truth is, of course, that grief never dies. The American counsellor Lois Tonkin reminds us that loss isn’t something we ‘get over’, and it doesn’t necessarily lessen, either. It remains at the core of us and we just expand our lives around it, burying it deeper from the surface. So with time it may become more distant, more compartmentalised and therefore easier to manage, but it does not go away.
The bereavement theory developed in the 1990s by the Dutch academics Margaret Stroebe and Henk Schut suggests that grief works in two primary ways and we oscillate between them. Their ‘dual process’ model of grief defines these as ‘loss-oriented’ stres-sors, where we are focused on our pain, and ‘restoration-oriented’ coping mechanisms involving activities that distract us from it for a while. All we can hope for is that the periods of paralysing, overwhelming grief become less frequent. But living with loss is personal to all of us and has no predetermined path or timeline.
The funeral of a loved one is just an early step on that path. In the UK, for the most part these rituals used to be rooted in the Christian Church of one denomination or another, but as the country has become more multicultural and secular, so have the ways in which we mark a death. In general, as a nation we are becoming less religious, and while our hospital beds fill up with those desperate for cures, our church pews are emptying of those who rely on their faith. Where in the past we might have accepted a terminal prognosis and turned to a church to ensure the health of our souls, now we are more likely to trawl the internet in search of every last vestige of temporal hope that might keep us alive for just a little bit longer.
The solemnity, propriety and ceremony surrounding death are fading as it grows more secularised. Gone are the weeks of professional mourning of bygone years, the mourning jewellery worn from the Middle Ages until Victorian times (I have a great collection of this, by the way), the doffing of caps as a funeral cortege passes, the memento mori which, I must admit, I’ve always found a bit creepy. Going are the hymns of old, to make way for Frank Sinatra or James Blunt. Our anatomy department recently had a gentleman inquire if we could possibly embalm his body as he wanted to be buried sitting on his Harley-Davidson and couldn’t think of any other way that he could muster sufficient corporeal rigidity. Utterly bonkers, if ingenious – we had to say no.
I was definitely born in the wrong century. I prefer a decent send-off like the traditional funeral processions you still see in London’s East End, the shining black carriages drawn by black horses bedecked with plumes, led by a top-hatted funeral director who sets a proper, respectful walking pace. They are magnificently spine-tingling in their pomp and ceremony.
I love a good graveyard, too. They are wonderfully peaceful and welcoming places, especially those in town centres, where their prime position reflects their importance to the community in times gone by. My grandmother and I would take a picnic up to the top of Tomnahurich Cemetery (always referred to by my father as the ‘dead centre of Inverness’) when we visited her husband in summer and my husband Tom used to run up and down its steep tracks when he was in rugby training. So many cemeteries have been abandoned and become derelict, perhaps paving the way for a future in which we create electronic graves, where family and friends can post memorial i
mages online. Not quite the same thing in my book.
As we grow older, we attend increasing numbers of funerals and take more notice of changes and trends as the old customs are swept aside to make way for how we think things should be done today. If I regret the disappearance of some of our longstanding conventions, I would acknowledge that in many respects the freedom we now have to mark a death by choreographing a farewell that more specifically reflects the identity, personality and beliefs of the departed is a positive development. And although mourning rituals are less protracted and less public, the grief is still as real. If the purpose of consoling the bereaved while honouring the dead is fulfilled, then who are others to stipulate how this should be done? Equally, tradition still matters for as long as there are those who gain comfort from it.
There is so much to do before a funeral can be held that sometimes you wonder whether the whole process has been expressly designed to keep you busy to distract you from your grief. Alongside registering the death, arranging the funeral director, obtaining copies of the death certificate and putting a notice in the newspaper, there are so many decisions to be made. Both my parents’ funerals took place at a crematorium chapel, which meant choosing flowers and hymns and writing a piece for the minister to deliver. Did we need funeral cars, and if so, how many? There was a casket to be selected (my father would have commented of his that he had burned better, which was ironic as that was exactly what we were going to do with it), a venue and catering arrangements to be decided upon for refreshments afterwards and we needed to make sure the right people were informed. In Scotland, where the interval between a death and a burial is short, the fevered activity necessary to get everything done in time brings out the best and the worst in people. There are inevitably moments that will go down in family lore.