Over the next few days I want to relate a story of the unexpected and how it is necessary to adjust to whatever happens and to be grateful for the dedication and self-sacrifice of others in human solidarity.
Today I recall the first day….Thursday 31st October 2013….. when, in the process of moving home from the village of Tayinloan in Kintyre to The Element in Western Harbour, Newhaven, I rang our GP, then on a house call 30 miles away, because I sensed my wife Joan, aged 75, was totally unexpectedly dying in bed even as the removal men packed up furniture around us.
Within an hour that afternoon the doctor arrived, detected catastrophic multiple organ failure and pneumonia, and called an ambulance to transport Joan immediately over 100 miles to the (then) Southern General Hospital, Glasgow. Hours later she was anesthetised, connected to a ventilator, moved in the middle of the night to Victoria Infirmary because of a lack of a bed in SG ITU and remained sedated.
When she eventually woke days later unable to speak, she knew neither where she was nor day or time. She was just aware of my presence, holding her hand. With her finger she weakly sketched “Where am I?”
Tomorrow I will write a little more of how I reacted as a consequence of something that totally changed plans, routine and expectations, carried by an overwhelming feeling of being cared for by others, most of whom I had never met. This story will continue in small episodes focussing on intensive care of many kinds. It is about our common humanity.
Intensive Care – Personal Empathy: Episode 2 Dream Fulfilled
Like many series, this needs a flashback for context to make sense of expectations changed by circumstances. Twelve years back from a fated removal date in 2013 and on the cusp of retirement, we had bought an acre sheep-grazing field in Kintyre with outline planning permission for a traditional Scottish house. I had always longed to design our own house, so I did and helped build; over the years we fulfilled another dream, landscaping a garden with everything from large pond fed by a rill, orchard and soft fruit, formal lawn and beds, rockery, terrace with sunken garden, vegetable parterre, shrubbery and wild meadow and seven one-metre-cube compost bins. We enjoyed breath-taking views to the Inner Hebrides watching the sun setting from Ireland up to the Paps of Jura.
We had always planned to move Edinburgh before such an enterprise became more burden than pleasure. After much searching, one day in May 2013 we walked into an eighth floor flat in The Element with views to compensate those we would leave behind, and began to plan the next part of our life together stretching back over 60 years. The usual things relating to removal fell into place.
But on Thursday 31st October 2013 what we had not expected at all, Joan in an ambulance, leaving me agonising over wanting to travel with her but faced with huge logistical problems with removal at a critical point: our bed at last loaded as Joan was wired up to temporary life-support by para-medics.
I promised to follow asap – only to suffer a puncture five miles up the road with the car loaded to the gunnels and needing help. Everything on the pavement in the rain when mechanics arrived, quipping, “What are you doing, moving house?” “Yes”. By the time I reached the hospital three hours later Joan, a nurse knowing what lay ahead had already signed the general anaesthetic consent form. Still compos mentis, she interrogated me, “What kept you?” Only weeks later did I tell her.
Rodney Matthews – Vision Facilitator 9 iv 2020
Intensive Care – Personal Empathy: Episode 3 Waiting not Knowing
I don’t like hospitals. Who does? But when you are placed in a situation beyond your control all you can do is to trust. I spent hours on the night of 31st October 2013 into the early hours of the next morning doing just that, for the most part sitting alone, first in one hospital then in another, marvelling at the sheer complexity of all that was going on, deeply appreciative of a deep sense of compassion I felt all around me. Not to mention considerable skill and dedication.
I had eventually arrived at 10.45pm at the Southern General Hospital, Glasgow (replaced in 2015 by a new one), having driven 100 miles through the rain, puncture wheel changed and a call on my bog standard Tesco Nokia to my daughter in Shrewsbury asking her to come the next day – intensive care from family too. The ambulance taking Joan had left at 5pm. Hardly anyone in the reception area as I explained my predicament. Then I waited and waited, eventually to be taken to Joan’s bedside to be upbraided by her for taking so long. A few minutes later she was whisked away to theatre and I didn’t see her again until the next day. More waiting, wondering how I was going to collect keys and handle the arrival of the removal vans at 9 the next morning in Newhaven.
Looking back it was not straightforward. After an age a nurse came to tell me that they had no bed for Joan, so she must be moved across Glasgow to Victoria Infirmary. I decided to go ahead in case I got lost. Another car park. Another complicated entrance and challenging signs – but I got to love this old hospital. More wonderful empathy for my dilemma as I waited again. At 4am, reassured that Joan was asleep, in the safest of hands – night staff always so kind – I was sent on my way. They could always phone my Nokia! The night not yet over, as I got onto the motorway it was closed and I chose to divert via Stirling, eventually arriving at Newhaven Premier Inn just before 6am.
We’d planned ahead and booked a night, which cost me £70 for an hour’s sleep. The night porter thought me a little crazy but not drunk. Another day was about to begin, once again full of intensive care as human beings respond to need.
Rodney Matthews – Vision Facilitator 10 iv 2020
Intensive Care – Personal Empathy: Episode 4 Learning a new Pattern
From 1st to 17th November Joan was in the Intensive Treatment Unit of Glasgow Victoria Infirmary (built in 1890 and like the Southern General closed in 2015). I visited each day, either by car or by three buses, at the same time trying to sort out the aftermath of removal. The final day was to be frightening – but the future is always unknown.
Starting day two after one hour’s sleep in the previous 26, I was immediately struck by the kindness of sales manager in The Element who had last seen Joan in the flat we were to purchase, enthusiastically working out how we would organise it. How much we depend upon others in times of need. Now shocked by my news, he gave magnificent support as furniture vans arrived.
A Lower Granton firm, they had loaded over two days, leaving Tayinloan at 9pm long after I had left and parked overnight at base, plugging in our giant freezer full of soft fruit and off-loading it with a minimal rise in temperature. Under my direction they placed heavy furniture according to Joan’s plan. At 1.45 I left them to an estimated three hours more unloading, to meet Emma’s train from Shrewsbury and drive straight to Rutherglen. A tortuous Friday afternoon journey, we arrived at 4.20.
Those experiencing ITU will know you buzz, wait at length, use hand-sanitizer and a strict bedside routine. I met many others traumatised at a loved one’s sudden admission, able to reassure them of the love and skill of everyone involved. I was overwhelmed by so many staff seemingly dedicated just to Joan as if she was their only patient. This was intensive care.
Barely out of a coma Joan weakly acknowledged our presence but we were advised not to stay long. Back at The Element by 8 we could scarcely open the front door for the packing cases filling the hall – a job for another day as we decided to go straight back out for a meal at Ocean Terminal before summoning the energy to work out the logistics of beds.
In the next episode I will relate the ups and downs of the next two weeks in which I became attached to this old fashioned hospital until, just as I settled to sleep after midnight one night the phone rang.
Rodney Matthews – Vision Facilitator 11 iv 2020
Intensive Care – Personal Empathy: Episode 5 Attention to Detail
In the two weeks following the first return visit to Victoria Infirmary my diary journal expanded to 200 descriptive words each day, written late at night cataloguing an increasingly complex picture.
Leaving out details of an extremely complicated case involving multiple organ failure and pneumonia I was in awe at how many people were intent on Joan’s welfare. I recorded the names of a dozen consultants, each a specific discipline but part of a team meeting daily to review cases.
I have no idea how many patients they discussed. But every day they conferred about Joan, so that whoever I spoke to about a particular aspect was comprehensively informed. That is very reassuring when you see masses of equipment, wires and tubes and can do nothing but trust: true also of the entire nursing staff, checking equipment constantly. Early each morning I rang the ward as the night shift handed over and sensed the continuity of care and attention to detail.
Domestically I experienced the same love and care. Emma had dropped everything to come to my aid, leaving Mark to organise two teenage boys at home. My son Simon left staff to cope with his bistro business in Market Harborough for several days as he joined us. I was on liturgical duty at Old St Paul’s Episcopal Church on the first Sunday morning and immediately had this extended caring family in support. My new neighbours soon got to hear and offered help. Bizarrely the kitchen was ripped out and a new one installed – designed by Joan, now admired by visitors – the old one cannibalised into study units: mayhem prompted humour, also important in time of stress.
Apart from other supportive visits from relatives, for most of this period and beyond I was on my own to juggle daily visits with constructive settling in, including my first visit to IKEA. To ease the burden of driving 100 miles a day I travelled mostly by three buses, No 10 to York Place, boarded a 900 for Buchanan Street (allowing an hour’s sleep!), a walk and then bus to the hospital. And back again.
Then a long diary entry for Sunday 17th November begins: “A traumatic day. Having fallen asleep immediately on putting the light out at 11.48 I was disorientated at 00.12 by a phone call from V.I….”
Rodney Matthews – Vision Facilitator 14 iv 2020
Intensive Care – Personal Empathy: Episode 6 The Longest Day(s)
Not the summer longest, nearer the winter shortest. But 17th November 2013 endlessly long… “A traumatic day. Having fallen asleep immediately on putting the light out at 11.48 I was disorientated at 00.12 by a phone call from V.I. Joan had suffered serious internal bleeding and was being transferred to the Royal Infirmary where they had the equipment….”
Nearly 24 hours later I wrote about setting off by car in search of yet another hospital and waiting until 2.25 for an update. Into a private “relatives’ room”, seeing Joan before and after a critical op. Back to Edinburgh later, once again meeting Emma answering my second emergency call. She drove us back to Glasgow. More reassuring conversations with consultants.
Emma is a solicitor specialising in clinical negligence (forbidding me to disclose that!) so could understand more than me. We talked at length, supporting each other, returned home to eat and phone others, retiring again at midnight.
Three hours sleep this time before a call at 2.50 to report bleeding restarted and they must investigate immediately – but no need to rush over. Sufficiently unsettling to prompt me to start unpacking more boxes while waiting, I inevitably woke Emma. In due course two more visits and consultant updates with a reflective walk in between. Company is good at such times. Putting Emma on a train at Glasgow Central, I returned home for the evening after a B&Q call.
It couldn’t happen again. It did. That evening Joan’s elder brother in Yorkshire insisted that if I needed to travel in the night I must take a taxi and he would pay. I checked whether taxis went that far. “As far as you like gov, if you pay”. It cost £140 but was I glad when the phone rang for the third night in a row announcing a major set-back and very risky invasive surgery. I slept the whole journey and spent the rest of the night on my own in a serene private room composing myself for Joan’s death. My rector friend Ian visited and unable to see Joan anointed me. On my own again prepared for the worst, the surgeon eventually arrived to report fragile stabilisation.
I’ll conclude this longest day(s) tomorrow, moving swiftly through ten more to the next drama. Google “Clutha” and you’ll arrive ahead of me.
Rodney Matthews – Vision Facilitator 16 iv 2020
Intensive Care – Personal Empathy: Episode 7 Responding to Drama
How complex the human body is and how many people involved at the critical point of challenge represented in an intensive care unit. We now hear a great deal about ventilators, even though the Prime Minister did not need that degree of invasive intervention. Joan did, involving a complexity of equipment, monitoring and concentrated dedication.
On recovery the PM paid tribute to the New Zealand nurse who kept him alive second by second through every night, twelve hour shifts. First thing each morning I rang at hand-over time to speak to the nurse who had done just that.
As days went by the pattern of visits alternated between early and late, depending on other demands but invariably involving a consultation with one or more specialists, each with a particular role but never in conflict with each other. Very gradually a weaning programme was started, half an hour off the ventilator, then one, two but always needing to revert. Intravenous feeding throughout meant no pattern of meal-times, so this occasional relief to monotony the only variation in a seamless journey with no difference between day and night.
Towards the end of November I thought of a way to provide rhythm and progress. Through December we have always burned an Advent Candle daily and once the children left home sent them one each to maintain a family tradition. That would not be possible in hospital. I didn’t want to suggest second childhood but wondered whether an Advent Calendar might be the answer. On Friday 29th November, following an early visit, I bought one on the way home to deliver at the weekend. That evening, unsurprisingly tired, I went to bed early.
Then another abrupt change that sees a hospital team adapting to whatever is demanded. Even before I rang the ICU on Saturday for the usual report I heard alarming news. A police helicopter had crashed on the Clutha, full of Friday night clubbers. Many deaths and injuries too, some serious, taken quickly by ambulance to the nearby GRI. I guessed the rest.
Arriving at 1pm I had to wait longer than usual for admittance. Everything had changed. Joan had been moved, still within the unit but was disorientated. Some around her did not survive but each patient was given the same meticulous intensive care. Cause for gratitude.
Rodney Matthews – Vision Facilitator 17 iv 2020
INTENSIVE CARE – PERSONAL EMPATHY: EPISODE 8 RE-PLANNING CHRISTMAS
Advent Calendar ready, another middle of the night call announced further emergency surgery, possibly brought on by the helicopter trauma. In the event they did not operate until midday Sunday. To my delight as I sat by Joan’s bedside, Natasha, “her nurse” from Victoria came to visit. What astonishing love these nurses show. Never mind clapping for the NHS. I hugged her.
The Advent count down began, days now distinctly marked. I can’t remember many pictures – I noted a lamb on day two – but each one appropriate, sometimes opened by me but often by a duty nurse before I arrived. Breaks off the ventilator restarted (set back by the Clutha disruption). Another long haul began. Dr Miles warned there was no prospect of a move to Edinburgh for a long time. I plotted the shortest walk from Buchanan Street and often went mid-visit to a nearby café. When this was not possible tea and toast were brought to me at the bedside. I felt guilty eating in front of a patient intravenously fed.
I began reading to Joan, who became alert enough to vet the annual letter we send with Christmas cards. As she paused I wondered whether she disapproved of what I was disclosing to those who had no idea even of our removal from Taylinloan. Then I realised it was dawning on Joan just how ill she was. She nodded assent and sixty letters were circulated. By mid-December she was off the ventilator permanently but still with breathing tube into her throat after a tracheotomy. Machines were monitored, readings recorded, brow mopped, staff consulted.
Original plans for Christmas were reversed: instead of us travelling to Shrewsbury the family of five came north filling the flat, energetic boys making the most of a David Lloyd bargain. A generous present of an iPad made possible filming round the flat and a Christmas table toast conveyed the next day. Showing increasing interest (not to mention control!) Joan croakily told me not to put up any more pictures until she could direct. Thirty remained packed. On 27th the whole family were permitted round the bed at once and before settng off south recorded a cheery get well message for the New Year, hopeful that 2014 would bring that move to the Western General so close to home.
Rodney Matthews – Vision Facilitator 18 iv 2020
Intensive Care – Personal Empathy: Episode 9 Insight into Intensive
‘Intensive’ is not used casually. There is good reason in the current crisis for the strategy of ensuring not only that there are enough ventilators but also the supportive equipment, specialist staff and necessary space. Sometimes the term is ITU for treatment. Mostly now ICU emphasises the ethos. Both are essential and skill of invention is matched by true vocation that has prompted the weekly round of growing applause for countless numbers of dedicated human beings.
In the current climate I have found myself looking back over six years to an experience of total absorption in what was then necessary helping to form my outlook, prompting a sense of inter-dependence. Each morning brought fresh challenge, each night without exception deep gratitude.
Most patients pass relatively quickly through ICU into a general ward, although sadly others die. Few remain under such intensive surveillance as Joan for such a long period. Corvid 19 is only one cause for admission and extra demands concerning possible infection of other vulnerable patients must bring huge anxiety – one reason why the current regime with its deliberate distancing mantra is so important. Throughout her hospitalisation Joan was especially susceptible to infection.
January is a dark month and the shortest route from Buchanan Street to GRI is etched in my memory as tedious. In heavy rain I opted for a taxi, expensive yet saving little time. There were long periods of sitting waiting whilst Joan was hoisted into a chair to help strengthen her. Occasionally I witnessed this but even though screened she found it both undignified and excruciatingly painful. It also led to a battle of wills; one nurse beginning training not appreciating the difference between this frail human frame and a rugby player recovering from a heart attack. Perhaps over-tired herself she challenged Joan for not trying hard enough with exercises. Big mistake! But the overwhelming majority of all staff were exceptional, from porters and cleaners to the chief consultant.
Simple mouth feeding was tried, with a request for me to make a jelly; the next day abandoned after digestion tests. A possible transfer to Edinburgh’s Western General involving a specially equipped ambulance was shelved when no bed was available. Even that carried a warning that the eventual journey home – where I must learn a personal and intimate caring role – was months away.
Rodney Matthews – Vision Facilitator 21iv 2020
INTENSIVE CARE – PERSONAL EMPATHY: EPISODE 10 HOPES RAISED…AND DASHED
I am not surprised that those charged to plot an exit from “lock-down” are reluctant to raise hopes, even though the need to know is reasonable. We all crave better times whilst recognising that we will not return to “normal” as if nothing has happened: only “new normal” of a world changed, perhaps radically.
Joan made imperceptibly slow progress, coached by a skilful physiotherapist, another extraordinary team member. Five hours in the chair was a great achievement, although still a palaver to hoist her back into bed. I began learning clinical home care, reluctantly accepting that confinement in an eighth floor apartment would be all we could hope for, holiday dreams fading.
I had designed Wester Lodge (hence my email address) with our bedroom looking through French doors across a balcony to a view from bed of Hebridean Islands. If either of us became bedridden this would sooth. Ten years later there would be views to compensate confinement.
I persevered with post-removal in the way any who have down-sized will recognise. Ironically on one of our cross country journeys Joan had salvaged from a skip shelving which has added to ex-kitchen units to furnish my study. On hospital visits I showed Christmas presents received. Hours were spent in mutual support with others in the waiting room. With lengthy sessions with consultants anxious about my daily journeys, Dr Quasim, in charge, hinted a transfer to Edinburgh getting closer. Tuesday 21st January 2014 started well but ended badly.
Practical tasks done, I was about to leave for Glasgow when I took a call to say Joan was about to be transferred to Edinburgh. Able to speak to her, we agreed that rather than miss one another in transit I should wait for her arrival, just going two miles to the Western General. But at 5pm Dr Quasim rang to apologise that no ambulance was available. Joan, waiting in wheelchair, had become agitated and tests suggested a new infection. She apologised that for the first day I would miss seeing my wife. She was wrong. I drove over immediately but was deeply distressed at the relapse, all equipment re-engaged.
Back home Emma rang to reassure me. Visiting twice the next day test results showed Joan back pre square one but now much weaker. Evening phone calls brought wonderful family support.
Rodney Matthews – Vision Facilitator 23 iv 2020
INTENSIVE CARE – PERSONAL EMPATHY: EPISODE 11 “A DAY THAT HAD TO COME”
Prompted by appreciation of front line caring I have been relating a story based on a journal written more than six years ago. One final episode will follow this: an Epilogue about intensive care. But this one completes the narrative. 23rd January 2014 begins, “A trying day but one that had to come.”
Up at 5 for more study furnishing. The hospital call did not relieve anxiety. At Leith Mount Surgery for my annual ear syringe my Nokia buzzed. I apologised to the nurse explaining why I must answer. Joan wanted to see me. I drove straight across and was called into the office. Joan had asked for life-support equipment to be removed as she wanted to die in peace. The consultant added awkwardly that Joan did not want the children told. How could I not tell them? I worked out why. Joan had always challenged excessive clinical intervention, especially if frustrating natural process. (I had been surprised when originally told she had consented to Ventilation). Dr Quasim now confirmed the fear that any further infection would prove fatal. Joan was confident I would concur with her settled will: but our son and daughter?
Given a private room with direct land line I rang Emma, then Simon. Each understood and within minutes Simon rang back to say he was driving to pick up Emma at Crewe and they would arrive by evening. With Joan barely conscious I reassured her the staff were responding.
I drove home, rang my rector friend and by the time I returned by bus the children had arrived and with Ian we all met in the consulting room. A misunderstood plea from Joan to ‘go home’ was considered but impractical since almost certainly she would die en route. Then I realised what she meant by ‘home’. We gathered around her in a private room as the nurses so gently removed all equipment. The instant change is indelibly ingrained in my memory. Instead of agitation an image of beautiful serenity. Ian anointed her and shared communion with Emma and me. Then everyone left us alone. I kissed her as she closed her eyes, slipping into unconsciousness.
We had been warned that the ensuing coma might last days before she eventually succumbed. At 12.30am I asked Simon to drive us all home. Soon after arrival Staff Nurse Kirsty rang to tell me Joan had died peacefully at 2. My tears were of overwhelming gratitude that at last she was free of suffering, death’s challenging threshold crossed. I miss her in countless practical ways but have never been sad at her dying. Nor did I wish to see the mortal shell that once housed her life.
After a short peaceful sleep I wrote to Dr Quasim, the letter delivered by Simon that morning. For me a new adventure had began, the better for the awareness of so much love and intensive care.
Rodney Matthews – Vision Facilitator 24 iv 2020
Intensive Care – Personal Empathy: Episode 12 Epilogue
One evening on our honeymoon in 1961, having walked too far to return in time for dinner at Woody Bay, we got a taxi from Lynton. En route the driver pointed out Lee Abbey, a retreat centre, commentating in Devonian drawl, “They wind they’selves up every night with an “Epilogue” (emphasising a long ō). TV used to end with a reflection on the day. We now manage with a once a year thought at Hogmanay.
This epilogue is not to summarise three dramatic months in my life more than six years ago. The purpose of the narrative has been to highlight from personal experience the ‘Intensive Care’ we are currently witnessing involving so much altruistic human behaviour, often supporting us in unsung ways. My related experience, sharpened and corrected by a contemporary journal is a witness to profound care, especially in crisis.
I wrote that each morning presented a new challenge yet each night without exception brought a deep sense of gratitude. That remains the pattern. Continuing to care, as families do, there was concern that because of such a close relationship going back 60 years I would be lost and lonely. Neither has been true nor did I expect it. Growing up through the London blitz with my bed permanently in an air-raid shelter and playing in bomb craters provided a grounding in resilience to take whatever life brings. I was aware of the good fortune of survival but with no pre-war memory I felt no deprivation, surprised when the return of bananas was heralded. I’d no idea what they were. I wonder who will find adaptation to the unknown future most challenging.
What will the children make of the post Corvid 19 world they will help shape? They may teach their elders. I hope they greet each day as an adventure and are grateful each night. In a recent interview veteran environmentalist David Attenborough sounded optimistic that the younger generation can already know how to rise to the challenge ahead.
Episode 2 recalled a dream fulfilled, then changed by circumstance. My life is not as I’d imagined looking across the Forth seven years ago. Eighteen months ago expectations changed again the first time I set foot in Victoria Primary School and caught the imagination of “blue sky thinking”. I began to see a new vision as the Heart of Newhaven started beating. It beats strongly now, as you can sense elsewhere in these pages. Even reading this you are part of that heartbeat, helping fulfil a dream whatever the unknown challenges each morning, prompting gratitude each night.
Rodney Matthews – Vision Facilitator 26 iv 2020