The following account of Mark’s last days was written by his son, Miles, and is posted on his behalf:
One of my father’s main intentions in writing his Blog was to allow fellow sufferers and their carers to follow the course of his illness from diagnosis to death. As we all know, he did this with as much humour and diversion as he could muster and he was not one for deep reflection on his mortality and nor was he inclined to spell out the course of his suffering in great detail. Unsurprisingly, MND ultimately robbed him of the ability to see his blog right through to the end, and, although I know he would baulk at anything that smacked of of self-pity, I do believe he would have wanted those who had followed his story so far to know how it ended. Nobody with MND, and nobody who has cared for someone with this illness, will be under any illusions that it is a harsh one and so I trust that the truth of what follows will ultimately prove to be a helpful part of my father’s legacy.
With the benefit of hindsight, Dad’s last blog entry (22 October) has a cruel irony to it. He wrote about how his visitors were remarking on how well he was looking and how he thought he may have plateaued. The idea of the plateau, or remission, was never far from his thinking but the reality was that his MND, though long-lasting, followed a steady trajectory of decline interspersed with sharp and sudden steps down – never up. Blog entries were written retrospectively so that for Monday 22nd October was written on Tuesday 23rd. On the morning of Wednesday 24th he was hoisted as usual into the chair in his study and he began to prepare the previous day’s entry. Soon he began to cough and complain of not being able to breathe. He was taken back to his bed, put on his Nippy respirator and a physiotherapist was called in to work on his chest to try to steady his breathing. The doctor detected an increase of fluid on his lungs and a course of liquid antibiotics was prescribed in the somewhat vain hope that this was due to an infection rather than the general weakening of the lung system. My sister and I were telephoned in London and warned that these developments could well herald the end. Within a few hours the scene for the next eight days was set – Dad in, or initially occasionally on, his bed with his respirator, wonderful Ross Nursing carers coming every few hours and the equally admirable district nurses appearing to deal with his syringe driver at least once a day. He needed turning regularly to maintain some comfort and initially could still eat a little and take regular drinks. We even had a little time watching his favourite DVDs – ‘The Forstye Saga’ or ‘Hornblower’. However, over the coming days his breathing steadily got worse, the gurgle on his lungs became louder and he became entirely reliant upon his respirator. Eating was reduced to some occasional jelly or custard and drinking was a complex round of ‘sips’ of water, juice and even a little of his beloved champagne – all administered in short bursts while the Nippy was held away from his face. Even at this stage his spirit remained strong, or perhaps it was simply the power of denial that is such a common natural resource in the dying. My father was a bright man and of course he knew what was happening. As the doctor told him with refreshing candour “You knew this was going to happen”. Of course he did but who could blame him for holding out hope that it would pass and he would be able to return to his chair, his blog and the hope of a plateau.
As the days passed and Dad gradually grew weaker his eyes were rarely open. Yet the immediate crisis had not resulted in the death that seemed so sure to follow. The level of medical care and constant supervision required begged the question of whether home was still the best place for him. The family had been in touch with the Arthur Rank Hospice in Cambridge some time before and they were contacted again and an appointment made for a discussion on Friday 2 November. However, events overtook us as on the night of Thursday 1st one of the carers noticed that my father’s stomach had quite suddenly become hugely distended. By this time he had become very hard to hear, a combination of his full-face respirator and a very weak voice, so it was difficult to determine how much pain he was in and where (his syringe driver was delivering substantial quantities of pain killers and anti-anxiety medicines). The emergency duty doctor was called just after 10 p.m and we waited until midnight when he finally arrived. The prognosis was far from clear but a blocked or twisted bowel was suspected and, despite being on anti-nausea medication, the risk of vomiting was a real one. So we were presented with two options – accept that risk or have him taken to Addenbrooke’s Hospital in Cambridge where he may be able to get sorted out if a tube could be inserted into his throat while keeping the respirator in place. It was, as my father rightly observed, ‘Hobson’s Choice’. However, as he knew well, to be sick with the respirator in place meant almost certain death by a grotesque suffocation, so Addenbrooke’s it was. This was by no means an easy option as we had been told he may not survive even being hoisted into his chair, let alone put onto a trolley and driven over twenty miles to hospital. The ambulance did not arrive until 2 a.m and the three paramedics who came with it were, thankfully, almost the only professionals with ‘bad attitude’ among the many good people we dealt with in the course of my father’s illness. Nonetheless, they managed, with a considerable amount of help and direction, to get Dad onto a trolley, up the garden path and by 2.30 a.m he was ready to go. The night was clear and very cold and the process caused him a good deal of pain but it had to be done. I was left holding the fort at home and my mother accompanied him on what she later described as worst night of her life. What was most difficult for them both was that health and safety rules dictated that she was not allowed to get up from her chair during the journey in order to move my father. Consequently, he was stuck in a painful position, bumping around on a hard trolley, the whole way. We all rather naively imagined that he would be seen by a doctor as soon as the ambulance completed its 40 minute trip to the hospital but in fact it was held in a queue and when finally unloaded Dad was left on a trolley for a good deal longer. When he was finally attended to the cause of his swollen stomach could not be determined with any certainty and indeed it gradually diminished over the coming days. However, it did mean that the next morning the question of whether to take him home again or to the hospice came to the fore and it was decided that it made no sense to subject him to another long journey home when it may well be that the hospice would beckon very soon. Addenbrooke’s and the Arthur Rank Hospice are only ten minutes apart and very fortunately there was a bed available – so the decision pretty well made itself.
Therefore, on the morning of Friday 2nd November Dad was admitted to the hospice and the final leg of his journey began. It is a remarkable place full of kind, generous and decent people – from the volunteers to the nurses and the management. The NHS often gets a tough press these days (and the Addenbrooke’s experience hadn’t shown it at its best) but this place shows just how good it can be. When he was first admitted Dad was still able to communicate to some extent and there was a resumption of the basic regime under which he had been cared for at home. However, as the days passed his voice was becoming fainter and fainter and he was becoming far less present. When he could make himself understood it was clear that he still retained a desire to gather familiar things around him. At one point he asked for his laptop to be brought to him but sadly he was well beyond being able to use it. Most importantly, we, his family were able to be with him most of the time. Chloe and my mother Alice spent several nights on sofa beds and Kimberly and I also undertook our shifts so Mum could get some much needed time back in Clavering.
While the hospice was exemplary in its care and definitely offered an immediacy and level of medical care that could not be matched at home, we were all aware that the question of whether Dad would remain there until his death had to be tackled. Although clearly extremely weak his repeated defiance of predictions of his demise made us wonder on more than one occasion whether he could go on like this for some days or even weeks to come. With this in mind we had a family meeting with Dr Margaret Saunders, the head of the hospice, at which she made it clear that the decision on whether he stayed or left was entirely ours. My mother was more than willing to have him home (with Ross Nursing ready to spring back into action) and so I put the simple question to my father – “Do you want to go home Dad?”. I assumed he would jump at the chance and a simple nod of the head would have set the process underway. However, to our surprise, he began to try to dictate a lengthy quasi-legal letter to the doctors, most of which we simply could not understand. As it turned out, this distressing episode was almost his last real engagement with us as the next day he woke very early and distressed and shortly afterwards slipped into unconsciousness. When Kimberly and I arrived to see him the next morning (Sunday) he opened his eyes briefly and I believe he knew we were there. I stretched out his arms for him (which he always liked as it relieved the pain in them) and when I asked if that was what he wanted he nodded his head. Although I did not recognise its significance at the time, this simple exchange was the last mutual communication that would take place between us. For the rest of the day Dad was unconscious – strangely peaceful on his back, freshly shaved and breathing steadily and slowly via his respirator. In fact, by this time, it was clear that almost all his breathing was in his throat – his chest was hardly moving and his lungs must have already almost ceased to function.
Early on Sunday evening my mother returned and shifts were swapped. Kimberly and I went back to Clavering and just hoping that Dad would still be alive when we returned on Monday morning. And he almost was. But not quite. If only I had taken a different turn and not got diverted, again. We were just 200 yards from the hospice when my mother’s name came up on my mobile and, forgetting the reality of what was going on just for a moment, we thought she would just be checking where we were. After exchanging a few words Kimberly gasped and looked at me and nothing more needed to be said. A couple of minutes later I was in Dad’s room – the nurses had put white flowers on his pillow and he was finally liberated from the respirator – that octopus-like clamp that had seemed to become so much a part of him – his head was cold and white but I thank God that his hands were still warm. He had died so suddenly and quietly that his last breath eluded even my mother who was in the sitting room next door. It was probably no different to the thousand breaths before it and in the final hours it was debatable whether he had any capacity for independent breath. But in the end, he slipped away as he had hoped he would – no choking, no suffocation and no chronic pain.
Dad said right from the start that he would opt to be one of the MND sufferers who survived for five years and he pretty well made it. If he had had the luxury of choice then doubtless he would have written his blog entry for 22 October knowing it was his last – signing off online and from his life on the same day. MND makes no such concessions but neither did Dad grant any in return. He lived up to his motto ‘Carpe Diem’ and seized every day he could right up to the end.