When the going gets tough
This particular blog is about the parts of life we have to endure but would rather we didn't have to. I very much doubt there will be any humour or fun to be found here, just the thoughts of one man and some of the experiences he has lived through.
Tuesday, 1 March 2011
For Anita
Monday May 20th 1991 I walked nervously in to the lobby of Western Towers, opposite the railway station in Reading. Slowly there gathered a motley collection of twelve people, ten men and two women.
One of the women was a tiny, red-haired Irish girl of about thirty. The other was in her early twenties, pretty with a ready laugh and an inbuilt sense of fun. Anita.
For twelve years until I left Thames Trains to go to pastures new Anita and I shared so many moments, mostly railway moments but also more than a few personal ones, especially when we were both part of a small group of drivers renting a house - the notorious Cardiff Road - together.
It was at Cardiff Road I got to know her so well, always with a laugh, always caring, the calm and demure lady who, although normally never more than a social drinker, could out-drink anyone in the house when the drinking games started and yet sit there, in control and appearing only mildly tipsy whilst the self-proclaimed heavy drinkers were passing out around her!
I can tell you Anita was a fierce competitor when driving karts, as Arthur Gunn found to his cost trying to intimidate her going into a corner. He limped for a long time afterwards as Anita bounced her kart up and over his to lead him out of the bend!
Part way through the driver training we were at Newquay on a camping mini holiday together with what were then our respective partners. One early evening Anita was stood alone in the campsite looking wistfully into the Cornish sunset. The conversation we had has never left me.
"Are you ok, Anita?"
"Yea, I'm fine." - pause - "Nothing a bottle of gin and a hot bath wouldn't sort out."
"Oh! Do you think you're - oh, Anita you are - you really are."
"No - I'm not sure yet - not done a test - just a bit late but . . ."
"Anita, you are!"
You could see it. Her skin, which was always clear and smooth was absolutely blooming and her eyes were sparkling. For me there wasn't the slighttest doubt.
A few days later back at Cardiff Road Anita did the test to confirm one way or the other. At the end of the test the little device would show a "+" or a "-". Typically, for Anita it showed a "T" - neither one thing nor the other. But it was enough for Anita to realise she was expecting a baby and it was so easy to see her mind racing through all the implications this would bring. After a minute or so she went up to her bedroom to be alone with her thoughts and her tears.
She had been up in her room about ten minutes or so when I ventured up and knocked on her door. I went and sat on her bed and quietly explained to her that as far as I was concerned Cardiff Road was her home and her having a baby didn't alter that. Whatever problems she faced having to leave the house was not going to be one of them. I only tell you this because of what happened next.
I went back downstairs and was sitting in the living room when Anita joined me a few minutes later. She went to the stereo put on a record, sat with me listening to it and then, when it had finished, turned the stereo off and went back up to her room alone. Just the one track.
I never did ask her whether the record she chose was because it was a particular favourite, because it fitted her mood of the moment or whether, as I felt at the time, there was a message in it for me. If it was the latter then it really was - and still is - the kindest thing that has ever been said to me, even if it was from the words of a song.
I never will know now what Anita's motives were for playing just that one track that day. All I know is what I felt in my heart at that moment and still feel to this day.
From that day Anita resolved that she was going to finish her driver training and having a baby was not going to change the direction her life was going. She was going to be both a mum and a train driver. And she never wavered.
In all the years I worked with Anita she never expected any favours or any different treatment because she was a woman in what was essentially still a man's environment. Even though she was one of the pioneering women who entered the world of train driving she managed at work to be that most unique of people - one of the lads whilst still being so, so feminine. She took all the messroom banter, all the verbal rough and tumble a group of men can give and yet remained one of the depot's favourites because of her determination, her dignity and composure, laced, as always, with her ever present sense of fun.
In each of our lives Anita and I endured our shares of heartbreak and emotional upheavals and were always, always there for each other. More than once we shared our tears and pain - plus our cussing at the people who hurt us. But by far and away most of my time spent with Anita was hearing her laugh. If there was a funny side to any situation Anita would see it first.
Her laugh is easily my most prominent memory of her. That and her love of her family.
It was some time after Anita had been diagnosed with her illness that I next got to see her. I spent an evening with her at her home, an evening without a hint of self-pity or complaint. Clearly she was afraid of what the future held for her and for Chris and her children but she accepted the cards that life had dealt her personally with such equanimity.
The laughing girl I had met eighteen years or so earlier, the fun, pretty, intelligent and yet in some ways naïve girl had grown into a woman I could only watch with awe as she sat there, an object lesson in dignity, maturity and grace.
When it was time for me to go, stood at her doorstep with Chris just behind her, and in a very emotionally charged atmosphere, we hugged each other very tightly together and Anita told me she loved me. This wasn't a time for glibly repeating the mantra. I meant every bit of it when I said, "And I love you too, Anita."
And then, for the only time in all the years we had known each other she leant forward and kissed me on the lips. In that moment Anita and I acknowledged what we had always known - that the big brother - little sister relationship that evolved between us had been special, unique, just ours.
I cry as I write this, a selfish and self-absorbed emotion as I realise a very special friendship has gone. But I promise you, Anita, after I have finished this I will only ever think of you with happiness and a smile on my face as I once again, in my mind, hear that lovely laugh of yours.
So long, little sister - you were so special. x
Tuesday, 12 October 2010
Lost In France
As we heard Stacey’s motorbike make its way through the estate in the early hours of the morning Brian told me a tale from the last time he was waiting for her late arrival for a trip to mainland Europe just a few weeks previously. He had heard her motorbike engine getting louder as it made its way through the estate towards his house but was intrigued to hear periodic loud beeping noises getting closer as well.
When his daughter had arrived he had gone out to greet her and asked about the noise. She explained that every time she turned sharp left her horn button was hitting the luggage bag she’d secured to her petrol tank. Brian asked Stacey if she had thought of stopping and moving the bag back a bit so that the noise would stop and, to him more importantly, prevent his neighbours being woken by the noise of her horn should they have been lucky enough to sleep through the noise of her bike arriving at four in the morning. Her blank and uncomprehending stare confirmed Brian’s worst belief - she would have happily ridden for the whole of the two week journey with her horn beeping at every left turn.
As our laughter died away Stacey arrived - late again - for the start of this trip, a five day ride through France, a triangular journey from Calais across to the Loire Valley then riding east in the rural area south of Paris before heading north through Reims and back to the ferry and home. It had been hastily arranged following the sudden cancellation of my planned bike ride to Estoril in Portugal.
Her ubiquitous late arrival caused us no problem - in fact we had told her to meet us half an hour before we intended leaving because we knew if we could depend on nothing else we could be sure Stacey would arrive late. She always did.
Our first night stay at the hotel at Le Lude, about thirty miles south of Le Mans was something of a disappointment. I had stayed there twice, once with Brian, and although the décor was tatty and tired the owner had been very friendly - she remembered me from my first stay to my next two years later - and, most importantly, the food was exquisitely good even by French standards. This time however we were to find the hotel had changed hands. The décor hadn’t - the rooms still looked frayed - but the cuisine most certainly had - it was now little more than a pizza parlour - a savage decline in quality since the previous visits.
In the hotel restaurant we sat eating our meal that first evening; Brian and I were amused by Stacey’s squealed delight having ridden on the part of the Le Mans 24 Hour race track that comprised of public roads. For all her thirty-two years Stacey had never lost a child-like enthusiasm for the things she did in life. As we were chatting all the lights in the restaurant were turned off save the one over our heads and the staff stood, arms crossed, leaning against the doorway clearly waiting impatiently for us to finish our coffee and go. It was only nine fifteen in the evening. We decided there and then that we would suffer two nights in this hotel but no more and would eat elsewhere for the rest of our stay. And we most certainly would not be returning to this particular hotel after this trip.
| Just 24 hours before the accident |
Stacey took this moment to open up about a lot in her life, her plans to buy her mother a dog as she had become housebound since grieving the death of her second husband five years earlier. Stacey figured if she bought her mum a dog she would have to walk it every day which would force her out of her self-imposed, cigarette fuelled, social exile in her kitchen plus help her to start losing the weight she had been putting on due to the inactivity.
She told me, too, that she had finally met a man she thought a lot of - not the most successful area of Stacey’s life and seemingly the previously vain search appeared to be over and she was even talking excitedly about having a baby in the near future. There was the feeling that once she had dealt with facing up to her dad’s illness and looming death her life would actually start to look as though there was some hope of a bright future for her personally.
The following day we started a leisurely meander across France towards Reims following roads which led us through little villages where we stopped for breakfast and lunch at pavement cafes, people watching, chatting and just enjoying this favourite country of ours and all it had to offer. From Le Lude we were heading to Orléans, Montargis, Sens and then riding the small, quiet «D» roads towards Épernay then onto the beautiful city of Reims, our final destination for that day. The plan was to stay in a hotel out of town but ride into the city centre for Stacey’s favourite moules et frites at her favourite restaurant.
Mid-afternoon Stacey and I stopped for fuel whilst Brian, who had been leading our entourage, rode on as was his wont. He was confident I knew the route we were following and he would stop if there were any major turnings or junctions we needed to consider. After fuelling up Stacey and I rode on, at a fairly leisurely pace, Stacey leading and me about twenty metres behind her and to one side so that I could see the road ahead. We’d all ridden thousands of miles together so had established routines and would always know where to look for each other on the road.
Riding through the tiny town of Le Caure, about sixty miles east of Paris I started to feel as though it would be nice to get to the hotel, park up, get out of the warm, sweaty and heavy motorcycle clothing and have a long, soaking shower. It was about four-thirty in the afternoon and we had been on the road for roughly seven hours. As we left the town the slightest of left hand curves opened up to a proper French avenue, an arrow-straight road lined on both sides with trees. Just before we reached the curve I suddenly thought, “Stacey’s heading for the kerb” followed a second later by, “She’s going to crash into that kerb.”
What happened next took no more than maybe three of four seconds. It will certainly take longer than that to write or, come to that, read it. And you will need to understand that in the circumstances I was about to find myself you don’t actually think anything. You just absorb what you are witnessing, very clearly, very memorably, but it is no more than a constant input of information and the brain shuts down the thinking process and just soaks it all in.
One of the essential skills of motorcycling is overcoming one of nature’s inbuilt skills it gives us to help us live longer. It is an entirely natural reflex that when you see a potentially threatening hazard your fight or flight response will automatically insist you keep your eyes fixed upon that hazard. As a biker you have to train yourself to override that instinct. Simply, if you round a bend and see a large brick lying in the road your safety will depend on you training yourself to look not at the brick but at the piece of road you intend to ride on as you pass it for another inbuilt reflex of ours is that wherever you look is where the bike will go. Stare at the brick and you most definitely will hit it.
A friend of mine was killed in an accident three years ago when his bike ran square on into the only tree on the outside of a bend. If he’d looked at the ground to the side of the tree he would still be alive, maybe nursing wounds from the accident, but alive to watch his children grow up. Sadly he failed to overcome the reflex.
I mention this because I didn’t actually see Stacey’s bike hit the kerb. I was braking, firmly but not too hard, and needed to see where I wanted my bike to go. I glanced across to where the accident was taking place and all I could see was a massive cloud of turbulent dust with a maelstrom of large, dark objects whirling about within it.
Back to looking at the road as my bike was slowing down and then another glance up and I saw Stacey coming flying away from the maelstrom about seven or eight feet above the ground. She was horizontal, facing the ground, arms spread ahead of her for all the world as though she was floating on water studying the fishes swimming below the surface. But she was rotating slowly as a helicopter blade would. Then she landed on the road just ahead of me with a sickening thud. I parked my bike diagonally across our side of the road so that it would protect Stacey from any following traffic. I remember putting the indicator on so that the flashing light would warn traffic the bike was there but then instinctively turned the ignition off and removed the key thus switching the indicator off.
As I ran to Stacey I had my first clear thought. If she cried out aloud she was probably hurt but nothing to worry about, something which could be fixed. If she was silent then in all likelihood she could have injuries likely to be very serious. She was very silent - in fact the whole world seemed to be totally noiseless. As I got to her I saw a pool of blood almost the size of a dinner plate under her crash helmet. Stacey was lying on her left side, knees slightly bent, with her left arm behind her and her right arm laying across her stomach. She was pale and very, very still. I called her name and stroked her face. No response at all.
I stood up and looked up and down the road. I don’t recall seeing any traffic ahead of me or in my mirrors before the accident and yet there were a few cars stopped each way and with all of them the drivers were leaning against their doors staring at me. Then a gang of about ten or twelve men ran from a timber yard just beside the scene. They all stopped in their tracks alternating their gaze between me and the prone motorcyclist lying in the road. In the time honoured way I looked at them and slowly drew my fingers across my throat. It’s over.
I took my crash helmet off, removed my ear plugs, threw them to the ground in frustration and then went and stood in the road waiting for Brian to come back. He and I have never agreed on how long I would have been stood there but I think it wouldn’t have been longer than five minutes. I just stared along the road in the direction he would return, my mind quite blank.
I remember as he eventually rode up the road towards me my thoughts started racing trying to think what to say to him. No coherent suggestion was forthcoming and when he came to a stop beside me I just said, “You don’t want to go over there, Brian.“
“Of course I do, it’s my daughter” he replied.
“Brian, it’s bad.”
He rode his bike up on to the grass embankment at the side of the road, opened up the topbox at the rear of the bike and got out his fluorescent yellow jacket. I knew from previous experience with Brian that when he put this jacket on he also put on his policeman’s head and all his training from his job kicked in, his ability to analyse everything calmly, clinically and logically.
“Brian, I think it’s all over” I blurted out.
He looked at me for a second or two, absorbing the significance of those words and then headed to where Stacey lay in the road, me following.
Stacey was now surrounded by kneeling workers from the timber yard all shouting at different levels but none louder than the one standing who was talking animatedly into his mobile phone and then passing on whatever was said to his colleagues. Brian barged his way through the group and, as he knelt down beside his daughter I said, “C’est sa pere,” letting the men know who he was. (To the linguists reading this - I know - but take it as an illustration of how my language skills deserted me when I needed them most.)
Stacey was now lying on her back and as we both knelt beside her she suddenly managed three rattling gasps of air.
She wasn’t dead. How could I have got it so very wrong?
Brian said, “Stacey, it’s Daddy!” Getting no response and thinking the gasps were a sign that she was choking he started to try to release the strap holding her helmet on at which moment the shouting amongst the Frenchmen increased and they dragged Brian’s hands away. He knew, as all motorcyclists know, that you never remove a helmet from a rider unless they really are choking on a blocked windpipe or somesuch for fear of them having a neck injury and risking paralysis through careless removal. He offered no resistance as they pulled him away from his stricken daughter - allowed himself to be restrained from helping her.
Brian and I both walked away from Stacey and her surrounding carers and looked at her motorbike where it had landed at the side of the road on a broad pathway into a field. As we surveyed it and noticed that the exhaust pipes under the bike had been pushed up into the bottom of the engine by something large and round and there was extensive damage generally to the bike Brian asked me what had happened. Then we saw two large concrete bollards lying on their sides. Clearly these had caused the damage to the underside of the bike. Examining the scene we could see where they had originally been stood. With very real frustration Brian and I realised if Stacey had crashed five metres away from where she did - in either direction - she would have maybe broken a collar bone and damaged her bike but otherwise it would have been a relatively minor accident. She could not have picked a worse place to come off the bike.
I gave Brian my version of the accident. We had been riding along quite steadily, about 45 miles per hour, with no sign of anything untoward until Stacey’s bike started drifting towards the kerb and at that point it was obvious to me that, as incredible and unlikely as it seemed, she had fallen asleep whilst riding her bike. She had made no attempt to change the direction the bike was taking nor had she braked. I had been following her long enough to know the brake lights worked perfectly well but there was no sign of them at any time during the accident.
Suddenly I was so glad that I had been following Stacey. If she had crashed in the same circumstances whilst riding behind us there is no way we would have guessed falling asleep as being the cause. We’d have never known what had happened. In all the years I had ridden bikes, and travelled very long distances sometimes, I had never once come close to falling asleep and wouldn’t have believed it possible if it wasn’t for what I had just witnessed. I checked with Brian that he was comfortable with me giving that story to the French police; neither of us could think of any reason to say any different.
I thought to send texts to people back home, my son and his mother who was visiting him at that time plus a friend of mine, Judy. For a long time Judy kept the texts that we exchanged at that time; as Judy herself wrote, “ they were such an excellent narrative on events as they happened and they were full of emotion too.”
I’m sure Judy thought the first two texts were from a frustrated and agitated witness to a potentially fatal accident but, whilst they were most certainly that they were also very full of anger directed squarely at her.
The first text to Judy simply said, “This has all gone horribly fucking wrong”. She wrote back straight away, “Who, what, when, how?“ and I simply replied with “Stacey. Accident. Bad”.
We had endured a very on-off relationship which became quite emotionally stressful and tormenting and had finally ground to a full stop just a fortnight earlier and was the reason the trip to Estoril with her had been substituted by this trip with Brian and Stacey.
So the first two texts were my frustration venting itself at Judy and quietly blaming her for the sequence of events. The truth is she was in no way the cause of anything, just the catalyst that triggered the sequence and that was hardly her fault. After those first two texts, though, I kept Judy plus Christian and Peggy informed at regular intervals and have to say the exchanges with Judy in particular were a lifeline keeping my feet on the ground and giving me an essential avenue to voice the emotional and traumatic experience I found myself living through.
At about this time les gendarmes - one part of the French police - and les pompiers - the accident emergency service in France is provided by the fire service, known by the French word for “the pumpers” - arrived. One of the gendarmes, after speaking to Brian, came to me and asked what had happened. I told him as much as I could of what I had seen but found the French word for “fell asleep” eluded me, something I was going to suffer several times over the next forty-eight hours. I acted out my eyes closing and head nodding down and le gendarme said, “endormit”. I quietly said, “Oui.”
After giving my brief description I went back over to where Stacey lay, now with seven or eight pompiers around her. One of them produced the biggest pair of scissors I’d ever seen and cut straight through her motorcycle jacket. They then used the scissors again cutting through her jumper, tee-shirt and bra in one quick slice then threw her clothing aside.
I became aware of a woman, tiny in stature, about thirty with short, mousey coloured hair and metal-rimmed glasses, wearing a white linen tunic and matching trousers who suddenly knelt down beside Stacey, put the heels of both her hands into the middle of Stacey’s chest and then started pumping her chest up and down whilst counting out, “un, deux, trois, quatre, cinq . . . up to . . . onze, douze, treize, quatorze, quinze” at which point she nodded towards one of les pompiers who would squeeze twice the bellows attached to a tube which had been inserted down Stacey’s throat. I was astonished at the amount of effort la paramédicale was using for the chest compressions and how far down she pressed Stacey’s ribcage.
Up to this point I had again not really been thinking clearly, just absorbing information which was coming at me but I remember suddenly realising the stark reality that they didn’t give heart massage as a precautionary measure - they only ever do it because the heart has actually stopped. This was for real - Stacey was in big trouble.
The image of that young lady kneeling on that road and, against a backdrop of total silence, counting out, loudly, to fifteen in French, “un, deux, trois, quatre, cinq, six, sept, huit, neuf, dix, onze, douze, treize, quatorze, quinze” followed by two inflations will be forever burned in my memory and if I ever hear French counting in the future will always be transported back to that scene and see that paramédicale.
I have never felt so helpless or worthless in my life. Stacey’s life was hanging by a thread and all I could do was stand and stare with barely a constructive thought going through my mind, just a sense of watching a scene unfold in front of me.
The same policeman came back to me and asked me if I would be able to give him a statement. We were conversing in a mix of English and French. Most of his questions were concerned with what we had to eat and drink during the journey and the previous evening. The reality was Stacey had drunk just one glass of wine the night before so that was never going to be a factor. It would be a few hours before Brian was to discover the cause of her sleepiness.
We managed to get the statement written, in French, and the poor policeman was forced to endure me checking it line by line to make sure he had written what we had agreed with no alterations before I signed it.
It was about this time that the medical team, which had grown since I first noticed them, came to talk to Brian and I. Their body language spoke volumes and only reinforced their words, “C’est très, très grave.” - it’s very, very serious. They told us they were about to take Stacey to the hospital in Épernay and wanted to know if one of us wanted to follow. It had to be Brian’s decision and he chose to follow the ambulance and asked me to make sure Stacey’s bike was safely taken away and also photograph the accident scene to help us describe events to family and friends in England.
Brian and I were actually shocked to realise from this conversation that Stacey was still at the scene in the ambulance. This would have been at least forty-five minutes since les pompiers had arrived and we realised we had long assumed she had already left for the hospital.
As Brian followed the ambulance towards Épernay the rest of the medics left the scene and I was left with just four gendarmes who stood chatting amongst themselves. All I could do was take the photographs Brian wanted and then stand and wait - a long, long wait - something over an hour. Eventually the breakdown truck arrived and, as les gendarmes clearly weren’t going to dirty their hands, I decided to help the man get Stacey’s bike on the back of the flatbed truck. It was clear that the bike was way beyond ever being repaired, there was very little that hadn’t been damaged, but nevertheless I was trying to prevent the truck driver from being too rough with it - this was Stacey’s bike we were dealing with here and it mattered to me that it was treated with respect. I guess to him it was just another crashed vehicle.
One of les gendarmes asked me if I knew the way to Épernay hospital and when I told him no told me to follow him. We travelled quite slowly in convoy as darkness fell and I was so aware of the other traffic slowing down and behaving as they saw his car.
We drove to the service des urgences, their A and E department, and I rejoined Brian. Stacey was in the ward being treated and Brian and I were left in a small entrance area with nothing but a few seats and a couple of vending machines for company. We sat in a very subdued silence - there really was nothing much to be said. At one point Brian suddenly said, “I’m sorry they resussed her really.” It was a thought that had crossed my mind but I wouldn’t have dared voice it to him. From the body language and what little the medics had told us we were well aware that the outlook looked bleak should she survive.
After what seemed to be the longest two hours of our lives there was suddenly a flurry of activity as we were told they were transferring Stacey to the hospital at Reims. We had to get ready instantly and Brian took the opportunity to step into the ambulance to see Stacey once they had put her in there. What he saw didn’t ease his anxiety at all.
Access to Reims hospital at night is severely restricted but the ambulance crew made sure Brian and I were allowed in on our bikes and we followed them on a strangely convoluted roadway through the hospital grounds until we ended up at their A&E department. Brian and I were shown where to park our bikes and then led to a small waiting room just off the Intensive Care Unit.
We sat and waited for probably an hour or so during which we pondered at what point should Brian tell Stacey’s family in England what had happened. He didn’t want to tell them too soon in case they started to panic and prepare to travel to Reims needlessly but equally he didn’t want to deny them the chance of seeing her if things turned out for the worst. We both concluded it would make sense to wait until we had been given some report of her condition beyond, “C’est très, très grave“. We needed to have some idea of what her prognosis was.
Eventually a doctor came out and sat down with us. We quickly established that his English was better than my French and between the two languages we were given the latest update. Again it started with, “C’est très, très grave” but this time was said with a gravitas that left us in no doubt what we were being told. Stacey was not going to survive this. He asked us if there were any known conditions Stacey had. I had no idea what the French was for gall bladder neither was I able to describe in any way what it was we wanted to say. How do you describe a gall bladder in a foreign language? We knew she was due to have it removed the following week.
More frustratingly, we knew Stacey had some problem with her liver as well but, again, I just could not recall the word for liver, assuming I knew it in the first place. It was to be the following afternoon when the penny dropped. Who, especially of those who have travelled to France, has not heard of pâté de fois gras - pâté of fat liver?
It was during this conversation that I asked the doctor, having now fully realised the gravity of the situation, by a mixture of words and mime whether they would be likely to switch off Stacey’s life support. The answer was a compassionate and yet firm, “Non, en France pas de tout.” In France, not at all. The significance of that would be brought home to us within the next thirty-six hours. The doctor then went to check on her progress and told us we might be able to see her soon. Again, all we could do was sit and wait.
Brian’s decision making process had sadly just been made a lot easier. Stacey had just a short time to survive and the sooner he let the family in England know the better chance they had of seeing her before she died. He made the calls alone, stood outside as he smoked another of his ubiquitous roll-ups.
This little ante-room we were waiting in was open on one side and had three or four seats on each of the remaining three sides so was compact to say the least. Two French girls in their twenties came and sat in there and being in such close proximity to each other it was inevitable that some sort of conversation would start up. Without understanding the full circumstances I gathered there had been a dispute amongst some friends and one of them had fallen and hit her head on the ground. Her condition was serious but, so I believed, not life threatening. The girls kept going over the events to me and Brian - in no mood for small talk - got up and walked outside again. Another roll-up.
This conversation had been going on for some time when the girls thought to ask me why my friend and I were there. When I told them as best I could and let them know what we believed the likely outcome to be they went very quiet and seemed to realise that maybe their problems weren’t so bad after all and they certainly didn‘t know what to say to me from that point on. They made their excuses soon after and left me in peace.
The doctor returned really just to tell us nothing had changed. He then asked us if we had eaten. The accident had happened eight hours earlier and we had last eaten ten hours ago although that thought hadn’t occurred to either Brian or me. The doctor said he would try to organise something and, to both Brian’s and my surprise, it was he who returned about fifteen minutes later laden with trays containing ham, cheese, bread, oranges, biscuits, water, and orange juice. I had expected an orderly to deliver the food to us and would never envisage an English doctor going to that much trouble, although I do realise I could be selling the English medical profession short there - I’ve just never been in a situation to find out. Nevertheless, I was so impressed that he had gone to the trouble himself and felt some guilt that I only ate a little ham and cheese and drank a small bottle of water. Eating just seemed to take too much effort. Brian had no appetite at all and picked at a piece of bread but just couldn’t be bothered to eat it.
Shortly after this we were told we could go in and see Stacey. We were asked to be quiet as there were obviously other patients in the Intensive Care unit. Brian told me he wanted to go in alone and, naturally, he went first.
When it was my turn I walked into the ward and then along to a small, glass fronted side room. There Stacey lay, surrounded by all sorts of machines and medical paraphernalia. The sheets were pulled right up to her armpits to protect her modesty, her arms were lying on top of the sheets by her sides and her head was propped slightly forward on the pillow. She had a ventilation tube down her throat and the only noise was the ventilation machine sucking and blowing in a continuous rhythm, changing every couple of seconds and each sound being preceded by a click, t-sshhhh, pause, t-pheeeew, pause, t-sshhhh, pause, t-pheeew. Her face was very, very pale and it was clear that she was developing an enormous black eye and had bruising to the left side of her face. I gently stroked her cheek with just one finger of my right hand, thinking, “Stacey, it wasn’t supposed to end like this,” and tears just steadily streaming down my face. Life doesn’t get any sadder. Her skin felt chilled rather than cold. It was painfully obvious now, looking at her and the way she was wired up, that she was being kept alive. And there would be no recovery.
Back in the anteroom we were asked by a nurse where we were staying that night. We showed almost fluency in French by giving a proper Gallic shrug. It wasn’t something we had given any consideration to. The nurse told us there was a house opposite the hospital which contained rooms for family and friends of patients and she would see if they had a room for us. They did and so, approaching two o’clock in the morning, Brian and I secured the bikes and tried to find our way to the house. We knew it was a tortuously winding journey to the main gate and we could see the house from where we were so, after a short reconnaissance we found a gap under a fence and rolled on our bellies through to the other side.
We were shown to a small, plain but tidy room with two single beds and a curtained wardrobe. We both took our jackets and boots and socks off but had no inclination to get properly undressed and in to bed. Brian and I had shared many hotel rooms together so it wasn’t a question of modesty or discomfort, just simply that sleeping didn’t seem to be the most likely thing either of us would experience that night. We just laid down on our respective beds and stared at the ceiling. We spoke briefly about what we’d experienced and it was here that Brian wryly pointed out that if Stacey had to leave this life then she could never have picked a better way than with her tits out in front of eight firemen. Stacey - as with so many women - found firemen to be irresistibly attractive. She would have been pleased with that exit.
It was here that Brian told me he had searched through Stacey’s luggage - he had taken it from her stricken bike and loaded it on to his - and found Paracetamol, Ibuprofen and Co Proxamol tablets. We had to assume she had been taking a mix of these to cope with the pain from her inflamed gall bladder and certainly she shouldn’t have been riding her bike if she was taking the latter pain killers. Now her falling asleep made sense.
Whilst lying quietly on my bed I was forced to recognise something I had up until that point more or less taken for granted. Since the accident and the moment I had walked along the road to wait for Brian I had suffered a repetitious replaying of the whole accident sequence in my mind. It was interminable, never changing and continuous. As the replay got to Stacey lying in the road with the blood under her head it would instantly rewind to her bike heading towards the kerb. Then she would hit the kerb, the big cloud of dust would appear, Stacey would suddenly coming flying away at an angle and then she would land heavily in the road again. I’d walk over to her, call her name, touch her face and then stand up. And back to the beginning once again. Over and over and over.
I was still capable of thinking whilst this was going on and recalled Stacey’s moments on the trip. Her squealing delight at having ridden on the Le Mans track. Her awe when she saw the troglodytes’ caves - she thought we were pulling her leg when we told her there were cave-dwellers in France. She was so impressed that the caves had double-glazed frontages too. And most of all my mind slipped back to the previous evening when, in the restaurant that she and I had found for that night’s meal, I had offered her a taste of my hors d’oeuvre, Tartare de Tomats, and as she had said a firm no thank you her mouth had involuntarily opened wide and almost of its own accord reached forward and taken the morsel. As always her love of good food had overridden her diet plans. She loved food, she loved France, she loved French food and, most of all, Stacey loved life.
Eventually I managed to sleep for about thirty minutes, no more, but Brian never slept at all. At about half past seven we gave up the unequal struggle, got up, washed briefly - showering would have to wait until later - paid for our room and headed back to the hospital. Going back the same way we noticed a nearby gate and tried it. It was open. It probably was the night before but we hadn’t noticed it.
The intensive care took a long time to answer our ring of their bell and the whole time we waited we had no idea whether Stacey had survived the night or not. It was an agonising wait. Eventually a nurse appeared and eventually understood who we were and told us there had been no change overnight. “C’est très, très grave” was the response yet again.
There was nothing to do but kick our heels and wait. Just after mid-morning Caroline, Brian’s first wife and Stacey’s mother, arrived with her two stepsons, Ollie and Charlie, and her good friend Heather who had come along to support Caroline. I hadn’t seen Caroline for close to thirty years but this wasn’t the time to catch up on the intervening years. I told them all what had happened during the accident, told with such clarity from my still ever-playing video in my head. About an hour late Brian’s wife Mary arrived with her daughter Catherine and son, another Ollie. I had no idea whether Caroline and Mary had previously met and, if so, what their relationship, if any, was like. I didn’t really care to be honest, there were far more important things going on in the world at that moment. And it quickly seemed as though Brian and Caroline’s fractious relationship had been put to one side as they dealt with the drama we were all immersed in.
At one point Brian came to me to have a chat about a particular problem. As far as he was concerned Stacey could be buried or cremated in France - she had told us often enough how much she loved the country and just twenty-four hours earlier had said she never wanted to leave the place. But Caroline was upset at the thought of Stacey’s remains being left alone in a foreign country. I asked Brian if he had any strong feelings about where Stacey ended up and he said he didn’t, ever the pragmatic policeman as far as Brian was concerned once you were dead you no longer existed in any form except as people’s memories. I quietly suggested that if it didn’t matter at all to him but it clearly did to Caroline there was only one path to take and he seemed happy with that.
Just after midday we were all ushered into this small room. There were a few chairs in front of a desk, Brian and Caroline sat on the middle pair, and most of us stood behind them. I found myself stood at the back in a corner. There were three or four people from the hospital behind the desk, sat opposite Stacey’s parents. A woman in her late thirties or early forties, once we had all settled, looked at them both and said, quietly but in perfect English, “I’m sorry but your daughter is dead.”
I instinctively said out loud, “Elle est morte.”
They have to be the three most ludicrous, pointless, worthless words I have ever uttered in my life. The English present had just been told in the clearest words possible what had happened and the French there, having just told us in English, most certainly didn’t need to hear the news in their own language from me. I have never understood why that was my reaction, especially as my French had deserted me when I most needed it. It sure is strange how the brain works under stress.
Stacey’s stepsister, Catherine, started sobbing but the rest of the group accepted the news with a resigned silence. It was what we had been expecting.
After a few moments Brian asked everybody to leave the room except Caroline and me who I assumed he needed in case of any language difficulties. Brian and Caroline were then asked if they had considered Stacey being an organ donor and they both looked at each other and were in immediate agreement. We were told that the organ donor team would come to see Stacey and see what organs could be harvested and have a chat with the parents. This was when we were told that if Stacey’s funeral was to be in France then the State would pay for her funeral as a reward for being a donor - an idea the British government might do well to consider. Surely the cost of a few thousand pounds would soon be recovered from three or four people being taken off of health care as they await organs or, say, a patient being taken off kidney dialysis. But as Stacey’s remains were going to be repatriated it was unlikely that she would receive those benefits.
| Stacey at Verdon Gorge where Brian's ashes have since been scattered |
We had to wait a while for the organ donor team to do their preliminary work and talk to Brian and Caroline plus pick a moment when the relatives could go in and see Stacey. I took this moment to go outside, get some fresh air and send a text to the people in England telling them what we had just been told. I typed twelve letters into my mobile,
Stacey is dead.
And then I stared at it. Stacey is dead. I knew there was no way I could send that text. It just read so cold, so hard and brutal. I kept looking at it for a couple of minutes trying to figure how I should break the news, what words do you use when that news is coming from a text. And, suddenly, it seemed obvious. I added four letters.
Poor Stacey is dead.
The remainder of the afternoon was spent with our group forming and breaking little ensembles which drifted between the waiting room, the outside walkway and the hospital cafeteria whilst we waited.
Most of it became something of a blur with odd random highlights lifting themselves above the mental and emotional mist I seemed to be inhabiting.
Caroline, her stepsons, Ollie and Charlie in the cafeteria, both men looking especially shell-shocked and finding it difficult to grasp the news they had been given. It was Charlie, I think, who, realising his step-sister had died because of a lack of oxygen to the brain after she had suffered a heart attack at the scene of the accident, quietly observed that the three people who meant most to him and had died, his mother, father and now Stacey had all died of brain related causes.
And Caroline saying how much she had secretly admired Stacey’s free-spirited lifestyle only to discover from Ollie and Charlie that it had been far more free-spirited than she had realised.
Walking in to the waiting lobby to a profuse apology from Heather. She had been complaining to anyone who would listen that my motorcycle jacket smelled really badly and I would do well to get it cleaned. It was Brian who pointed out I had two Camembert cheeses in my luggage and with no refrigeration they were obviously becoming quite ripe!
And my overwhelming feeling that I was intruding in a family crisis and maybe I should leave the family to cope with their grief and start my journey back home. When I said as much to Mary she kindly told me I was family but still the feeling of being intrusive haunted me. When I later told Heather of my feelings and the thought I should head off and leave the family in peace she just quietly said, “So Brian will have to travel back alone then . . . “ and in that moment my thoughts were put into perspective.
The rest of that afternoon, as I have said, vanished in the mist of my mind.
Eventually there was nothing more to be done at the hospital and the whole party booked into a hotel found for us by Ollie and Catherine in Reims city centre. I had been wearing the same clothes for nearly thirty-six hours. A long, long hot shower and something fresh to wear had an effect more cleansing than I would have thought possible. And the quiet time before we all went out for dinner was spent reflecting on the previous couple of days, with the video still on constant replay in my head but relishing my first few moments properly alone since the accident.
We chose more by luck than judgment a good restaurant for our dinner that night, a meal which perhaps surprisingly was not sad, solemn or morbid but was most certainly subdued. Brian, sat opposite me, was clearly struggling with his grief and especially quiet for him; at one point midway through the meal he let out a really loud sob and said, to no-one in particular, “I’ll never hear her voice again”, and then he retreated into his own heartache. Caroline, too, was suffering in a way the rest of us could only imagine.
I could be wrong but I sensed the remainder of us all felt much the same thing - emotionally numb. It was too hard a shock to deal with at that moment and the heart was protecting itself from the pain that was coming until such time as it felt strong enough to cope and deal with it.
On Monday morning Brian and I rode to the funeral directors, le dépôt mortuaire, to arrange for Stacey’s remains to be brought back to England. Nobody there spoke English and my limited French was again woefully inadequate for our needs here but we muddled through as best we could. All was going well up to the point where the woman in charge telephoned the hospital to get the necessary details. Her voice and her whole demeanour changed - clearly something was not right.
She and her colleague made several attempts to tell us what the problem was, each time talking in more and more simple language but still I was failing to grasp because it seemed to me they were saying Stacey wasn’t dead.
Brian and I realised whatever the problem was we would learn more fully at the hospital so we went back to the intensive care as the only point of reference we had in the place. Fortunately somebody on duty spoke good English and explained what the problem was. The organ donor team had come to get Stacey ready to take what organs they could and had discovered there was a tiny amount of activity in her brain. And under French law all the time there is activity in the brain medical staff are obliged to keep the patient ventilated - breathing artificially - and connected to life support. The English method of deciding - with the next of kin - to turn the support off at some point is not an option in France. If there is activity they must sustain the life.
We were left in no doubt that the brain activity was absolutely minimal, that there was no chance of any recovery and Stacey would be officially declared dead when the activity stopped, which they assumed would happen in the next few hours or days, but until then they would be unable to release her body or issue a death certificate and so there was no chance of arranging any repatriation of her remains.
There was nothing to do at this point but pack up and head back to England. Brian and I could do nothing constructive to help or support Stacey - she was beyond anyone’s help - and we had no idea just how long this situation could last. The two groups who had flown out all had flights to get back home and so with some sense of frustration we all left Reims with its magnificent cathedral, beautiful globular fountain but, most poignantly, with Stacey being artificially kept alive in their hospital.
I had been dreading the ride back, imagining it to be an interminable journey lost in thoughts alone inside my crash helmet, reliving all that we’d been through and trying to ride my bike whilst watching the video replay of Stacey’s crash. I certainly did think back a lot but stayed focused on the job in hand and found the whole trip was one fast blur.
On the occasions we stopped for fuel or to stretch our legs Brian and I would, in brief clipped sentences, mention odd moments as they came back to us but if the conversation reached any depth Brian would say with a stony face, “I don’t want to talk about it” and shut right down. His coping mechanism was clearly not to think too deeply about what had happened and in trying to respect that I found myself walking on eggshells every time we talked.
At one fuel stop Brian waited for me to come back from paying the cashier to tell me, sobbing as he did so, that on his previous French trip, with Stacey, just a few weeks earlier they had stopped at these same motorway services and had paid the same cashier. That was the nearest he came to expressing any emotions as he struggled to keep himself together.
Over the next few weeks his need to be constructive and active and keep his logical policeman’s head on became more obvious, especially in his dealings with people and I strongly suspect he kept his real inner feelings for when he was alone.
Our final petrol stop was on the M20 riding up out of Dover. We knew from here we would just wave goodbye to each other when Brian turned off the M1 at Milton Keynes and so this was where we would last speak about the trip.
As is the way of these things, especially at service stations near to ports on either side of the channel, another motorcyclist came over to join us and ask where we’d been. I decided instantly to tell him that Brian’s daughter had been killed in an accident and we were just returning home. It would save us trying to make pointless small talk that we weren’t really in the mood for. This chap obviously wanted his small talk and prattled on until he stumbled into one of those embarrassingly inappropriate lines - something related to dying - at which point he scuttled off, red-faced and apologetic. He would have done well to realise that his faux-pas was far from our biggest concern at that time.
The journey home continued in the same blur. Once indoors I quickly showered and then telephoned Peggy to see if she was at Christian's house - in those days close to where I live. As a skilled bereavement counsellor she was the one person I would be able to talk to who I really knew would understand what I was feeling at that moment. I walked the mile to her house, rang the doorbell and heard her footsteps approaching.
I took a deep, deep breath so that I would be able to calmly and in a reasoned way tell her everything I experienced. She opened the door, said “Hello.“
And I just cried.
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| Brian and Stacey in France on an earlier trip |
Labels:
Accident,
Epernay,
France,
Le Lude,
Le Mans,
Les Gendarmes,
Les Pompiers,
Motorcycle,
Reims
Tuesday, 15 June 2010
When your parents' time has come
I am tempted to start with the rhetorical question, "Is there anything worse than . . . ?" But the truth is whatever it is I am writing about there will always be something worse. Always was, always will be.
I am aware, too, that when I'm writing I tend to look at the lighter side of life, really enjoy seeing the humour in everyday occurrences. But it's not always like that in reality, is it? Sometimes life is tough, hard, cruel and unforgiving. Sometimes you just can't ignore that fact either.
As one leaves one's childhood behind and heads towards adulthood so one becomes aware of the inevitability of one's mortality and, more significantly, that of loved ones. And I guess like everyone else I thought about how I would cope with the deaths of my parents and possibly also my siblings. I thought too about the likely manner of their demises - my dad seemed a certainty for cancer having smoked heavily for most of his adult life. My mother, a sufferer of high blood pressure for close to fifty years, always thought she would suffer a stroke.
The one thing I had never considered was my parents both being very much alive in their eighties. And yet so very much dead.
Dementia is such a cruel finale to anyone's life. Both parents, long since divorced, getting the disease, albeit in slightly different forms, at the same time was pure chance. Life's cruel lottery at work.
At the time of writing my mum usually recognises me when I visit, more from hearing my voice than seeing me but my father during the last visit clearly had no idea who he was talking to and in no way recognised his grandson, my former wife or me. I know some people feel hurt when the recognition just isn't there any more but it was something we had been prepared for. You could clearly see my dad's discomfort as he tried to answer the questions from these three strange people. You could see him trying to think of something to say but his memory bank was virtually empty.
He does actually know he has three children including a son called Kevin. Just doesn't equate that person to me. I'm in my late fifties - when he thinks of Kevin he's looking for what - a twenty-something? A teenager? A child? Who knows how far back he has travelled already?
My parents are in different homes near the south coast of England and in my father's case he doesn't relate to his immediate life before he went in to care. His main concern is the mistake he made leaving the Royal Air Force and most of his thoughts take him back to those days. When asked he thinks he left about three years ago. He actually left in 1948!
Years ago my parents were family friends of Johnny Haynes, at that time captain of both Fulham and England soccer teams. My dad has various pictures of Johnny in his playing days adorning his room and when my dad mentioned him I thoughtlessly said that he was, of course, dead now. My poor old dad sat down and started crying, clearly not prepared for the shock. I felt mean for not thinking before I spoke. It was a guilt I felt for all of five minutes but no more - in fact up to the point when he asked me as I looked at another photo of the player, "Does Johnny still play for Fulham?"
I recall being chastised by my family on a previous visit to my dad for asking him directly what year we were in. He thought for a few seconds and then said 1989. It was actually 2009. It is one of the standard questions they are asked when being assessed for the severity of the illness and far from feeling as though I was being unkind putting him on the spot with my question I was aware that within minutes he would have totally forgotten that he had been asked.
Reports say that he is reasonably self sufficient, still remembers how to play the piano, is sociable and content. But for my sister, Carole, and me it is heart rending to read the line, "Needs help cleaning himself after opening his bowels." Not that he cares - he lives on an entirely different level to us. But - if he did know . . .
Where my dad has Alzheimer's my mum is cursed with that plus vascular dementia. That is far nastier. Simply the blood vessels in her brain are slowly clogging up and, bit by bit, her brain is being starved and dying off. She fairly frequently has mini-strokes and will fall or collapse for no obvious reason. And that means another small part of her brain has died, never to recover.
She is currently completely incontinent and needs to wear appropriate underwear referred to by my sister and me simply as nappies (diapers to my American friends). She is blissfully unaware of this, thank goodness, and has no sense of not being "normal" at all apart from she does actually realise that her memory is not there. Hence telling you of her plight does not deprive her of any dignity. Dignity is simply a concept she does not compute or understand.
That last sentence has grown in significance since it was first written. One friend has challenged my thinking, another considered it opens up the whole question of dignity as a concept deserving of thought and consideration. To me it is simple - a loss of dignity, whilst being caused often by a momentary experience, is, an ongoing feeling. It is the reliving in your memory of an embarrassing or humiliating event especially in relation to the witnesses of it. But if you don't have a memory, especially a short term one, how can you relive that feeling. And if you can't relive it how can the dementia sufferer feel a loss of dignity?
I believe the loss of dignity that people refer to for dementia sufferers is the loss of the dignity we wish for them and would normally expect to afford them but as the person cannot feel it themselves the loss is ours, not theirs. I'm prepared to be challenged about this but these are my heartfelt beliefs.
Before the incontinence inflicted itself upon her we were asked to supply my mother with underwear which had solid padded sides to protect her hips in a fall. Asked on one of our visits whether she had got them and found them comfortable to wear she lifted her skirt and started to remove them in full view of my sister, brother-in-law and myself. Mine and my brother-in-law's anguished cries for her to stop what she was doing was met with playful laughter - she obviously realised she was creating some sort of scene, some sort of discomfort to us but clearly didn't recognise that what she was doing was outside of the what is socially acceptable as 'normal'. I think that was when I realised our concepts of self-respect, social graces and dignity are totally lost to dementia sufferers.
My dad's clothes are put out for him each morning but the order he dons them are of his choosing so it is quite normal for him to have a sweater under his shirt. Equally my mother has no sense of discomfort at the ubiquitous food stains on her clothing.
Throughout our lives shared with my mother she was far from the warmest person I have ever known - very far from it. I have no memories of ever being hugged as a child and I suspect my sister and brother are the same. Her life seemed to be a series of rejections and betrayals and each one I guess made her more defensive, more reserved as though protecting herself from the next heartbreak. She was fiercely competitive at everything she did, always striving to do each task, each challenge to utter perfection and, of course, always failing to reach the standard she aspired to. I long ago discovered that perfection doesn't actually exist; it's always one step beyond your best achievement. She never did realise that so for all the time she had her mental faculties she was living a life of failure, a failure more imagined than real.
I can't blame her in any way for the person she was, we are all just the product of our upbringings and whilst we can change it really needs someone special to be able to guide you through those changes. Sadly my mother never found that someone special for my father most certainly was not it.
The only part of her life with which she felt in any way satisfied was her ballroom dancing years. She was indeed a very good dancer, good enough to turn professional but in those days - the late fifties and early sixties - married mothers of three children were pretty much expected to "do their duty" raising their brood.
So to see this hard, competitive, perfectionist woman as she is now, bewildered, fragile, so vulnerable, liable to tears at any time is truly tragic.
My mother and father who raised me have gone. They've left this world never to return. I feel as though I have already grieved for the loss of both parents - although I suspect it is in reality an ongoing process - and realise I'll never again be able to talk to the couple who raised me about my life, their lives or any of the myriad things families share between them.
This is going to sound so cruel but it's not intended. It really is as though my parents have died but their carcasses just don't know it's time to quit. In both of their conditions if they had been family pets we would have had them put to sleep some time ago. But that's not an option with humans, is it? Society expects us to sustain their frail bodies for as long as possible.
Ask the question in the context of should they be put out of their misery and it makes it so much tougher to know what is best for them. Carole and I talk frequently about this and the truth is we are not sure they are suffering any unhappiness. They are most certainly not in any distress. They are in a blissfully unaware existence.
I describe their lives as being like the ball in a pinball machine - they are just bouncing off the bumpers and flippers of life with absolutely no sense of direction, purpose or even a sense of being. They just are. Just are what? I have no real idea. They seem to be existing in a mental vacuum.
Inevitably Carole and I have discussed at various stages what we will do if either or both of them suffer severe physical illnesses, strokes or heart attacks, for instance. Fairly early on I questioned the point in prolonging the lives of either of them in those circumstances, lives which far from ever getting any better are deteriorating continuously and devastatingly and will continue to do so. Carole argued for some time that for as long as they were content in the life they are living they should be allowed to be treated for a longer life.
I don't for one second think either Carole or I were right or wrong although our views were poles apart. They were just our own personal judgements of the task we feared we would be called on to undertake at some stage.
More recently we have started to agree that prolonging life would now no longer be beneficial to either of them - particularly my mother - and therefore in the event of such a severe and catastrophic illness we would ask that no attempt is made of resuscitation. Carole is more involved in the day to day lives of our parents if for no other reason than she lives much nearer to them so there is every chance she will be the one first asked to make the decision. Unfortunately for Carole she has suffered enormously from guilt all the way through my parents' descent in to this nether world they now inhabit.
She was asked by my mother to promise she would never be put in to a care home and would never be made to leave Epsom, the only town she ever lived in. My mother's eventual inability to look after herself meant that Carole was forced to do both things, and at that time because she and I were estranged - family difficulties we've probably all experienced - she was forced to make those decisions alone. She and I can both clearly see there really was no viable alternative. Nobody who lived close to my mother was willing or able to care for her, both Carole and I lived more than one hundred miles from her and she had already reached the stage where she would wonder the streets at night aimlessly. She had also lost a ridiculous amount of weight because it never occurred to her to feed herself.
Carole had hoped by moving my mum to the New Forest she would share more time with her family. Carole and her three children would be able to visit her on a regular basis, have my mother come to their house for, say, Sunday dinner and also be able to take her out for day trips to the coast, garden centres, etc. And that is what they did.
The one thing Carole hadn't bargained for was the brevity of sharing these moments with our mother. Within twelve months she had deteriorated to the point where taking her out of the home, even for a few hours, would cause her to be disorientated and far, far from her comfort zone. And, of course, her incontinence made it less than practical.
So for Carole the guilt has deepened as the reasons and justifications she used for bringing Mum away from Epsom and her home have disappeared in some instances. It is very easy to see that everything Carole arranged for our mum was done with the best of intentions and was the very best decision - I have no doubt whatsoever about that and there isn't one aspect of her care that I think I could have done any better myself, really there isn't.
None of this prevents Carole being wracked by this dreadful feeling of guilt, though, and I know that despite my protestations that there really was no better alternative there is nothing I can do or say to help her cope with what she feels.
For that reason I have stressed upon Carole that if and when the time should arrive that a decision has to be made about either parents' long term future that I will be more than willing to make any decision and relieve her of that burden. She really doesn't deserve to carry any additional guilt for making that decision, she already has more than her share. I guess there is a real chance that my courage and strength could leave me at that moment but for now I feel I would be capable of making the choice that really is best for whichever parent and for everyone else involved. It's a situation I have imagined and run through in my mind many times.
So, having spent odd moments over my adult years wondering how I would cope when I got the phone call or message telling me that one of my parents had died or was dying I find myself now thinking of having to make the choice to let them go and, if I am to be totally honest I also spending a lot of time wishing so much they would both just go to sleep and never wake up.
I see no meaningful future for either of them, no sense or purpose, as we know it, in their worlds, no sharing of any thoughts or feelings with their family because they are at the stage where they don't know who their family is. Just a worsening of an already sad, pointless and meaningless existence.
My dad is still in some ways the same person he ever was but a hollowed out version, if that makes sense. The core of him, the essence of the man is gone. All we have left is the shell. My mum is the complete opposite of the woman she used to be and has no resemblance emotionally or personally to the woman who raised us, just in appearance.
I wish their lives and the futility of those lives would come to a decent end. They weren't the feelings I ever imagined I would have and I am so aware I feel no guilt or shame having them. Will I when the inevitable ending comes? I hope not, really I do. But I'm aware it is possible. All those times I pondered how I would cope with their demise I had never imagined I would actually end up wishing my parents dead but dementia is a particularly cruel and heartless ending to anyone's life.
Dementia – it just eats away the soul.
I am aware, too, that when I'm writing I tend to look at the lighter side of life, really enjoy seeing the humour in everyday occurrences. But it's not always like that in reality, is it? Sometimes life is tough, hard, cruel and unforgiving. Sometimes you just can't ignore that fact either.
As one leaves one's childhood behind and heads towards adulthood so one becomes aware of the inevitability of one's mortality and, more significantly, that of loved ones. And I guess like everyone else I thought about how I would cope with the deaths of my parents and possibly also my siblings. I thought too about the likely manner of their demises - my dad seemed a certainty for cancer having smoked heavily for most of his adult life. My mother, a sufferer of high blood pressure for close to fifty years, always thought she would suffer a stroke.
The one thing I had never considered was my parents both being very much alive in their eighties. And yet so very much dead.
Dementia is such a cruel finale to anyone's life. Both parents, long since divorced, getting the disease, albeit in slightly different forms, at the same time was pure chance. Life's cruel lottery at work.
At the time of writing my mum usually recognises me when I visit, more from hearing my voice than seeing me but my father during the last visit clearly had no idea who he was talking to and in no way recognised his grandson, my former wife or me. I know some people feel hurt when the recognition just isn't there any more but it was something we had been prepared for. You could clearly see my dad's discomfort as he tried to answer the questions from these three strange people. You could see him trying to think of something to say but his memory bank was virtually empty.
He does actually know he has three children including a son called Kevin. Just doesn't equate that person to me. I'm in my late fifties - when he thinks of Kevin he's looking for what - a twenty-something? A teenager? A child? Who knows how far back he has travelled already?
My parents are in different homes near the south coast of England and in my father's case he doesn't relate to his immediate life before he went in to care. His main concern is the mistake he made leaving the Royal Air Force and most of his thoughts take him back to those days. When asked he thinks he left about three years ago. He actually left in 1948!
Years ago my parents were family friends of Johnny Haynes, at that time captain of both Fulham and England soccer teams. My dad has various pictures of Johnny in his playing days adorning his room and when my dad mentioned him I thoughtlessly said that he was, of course, dead now. My poor old dad sat down and started crying, clearly not prepared for the shock. I felt mean for not thinking before I spoke. It was a guilt I felt for all of five minutes but no more - in fact up to the point when he asked me as I looked at another photo of the player, "Does Johnny still play for Fulham?"
I recall being chastised by my family on a previous visit to my dad for asking him directly what year we were in. He thought for a few seconds and then said 1989. It was actually 2009. It is one of the standard questions they are asked when being assessed for the severity of the illness and far from feeling as though I was being unkind putting him on the spot with my question I was aware that within minutes he would have totally forgotten that he had been asked.
Reports say that he is reasonably self sufficient, still remembers how to play the piano, is sociable and content. But for my sister, Carole, and me it is heart rending to read the line, "Needs help cleaning himself after opening his bowels." Not that he cares - he lives on an entirely different level to us. But - if he did know . . .
Where my dad has Alzheimer's my mum is cursed with that plus vascular dementia. That is far nastier. Simply the blood vessels in her brain are slowly clogging up and, bit by bit, her brain is being starved and dying off. She fairly frequently has mini-strokes and will fall or collapse for no obvious reason. And that means another small part of her brain has died, never to recover.
She is currently completely incontinent and needs to wear appropriate underwear referred to by my sister and me simply as nappies (diapers to my American friends). She is blissfully unaware of this, thank goodness, and has no sense of not being "normal" at all apart from she does actually realise that her memory is not there. Hence telling you of her plight does not deprive her of any dignity. Dignity is simply a concept she does not compute or understand.
That last sentence has grown in significance since it was first written. One friend has challenged my thinking, another considered it opens up the whole question of dignity as a concept deserving of thought and consideration. To me it is simple - a loss of dignity, whilst being caused often by a momentary experience, is, an ongoing feeling. It is the reliving in your memory of an embarrassing or humiliating event especially in relation to the witnesses of it. But if you don't have a memory, especially a short term one, how can you relive that feeling. And if you can't relive it how can the dementia sufferer feel a loss of dignity?
I believe the loss of dignity that people refer to for dementia sufferers is the loss of the dignity we wish for them and would normally expect to afford them but as the person cannot feel it themselves the loss is ours, not theirs. I'm prepared to be challenged about this but these are my heartfelt beliefs.
Before the incontinence inflicted itself upon her we were asked to supply my mother with underwear which had solid padded sides to protect her hips in a fall. Asked on one of our visits whether she had got them and found them comfortable to wear she lifted her skirt and started to remove them in full view of my sister, brother-in-law and myself. Mine and my brother-in-law's anguished cries for her to stop what she was doing was met with playful laughter - she obviously realised she was creating some sort of scene, some sort of discomfort to us but clearly didn't recognise that what she was doing was outside of the what is socially acceptable as 'normal'. I think that was when I realised our concepts of self-respect, social graces and dignity are totally lost to dementia sufferers.
My dad's clothes are put out for him each morning but the order he dons them are of his choosing so it is quite normal for him to have a sweater under his shirt. Equally my mother has no sense of discomfort at the ubiquitous food stains on her clothing.
Throughout our lives shared with my mother she was far from the warmest person I have ever known - very far from it. I have no memories of ever being hugged as a child and I suspect my sister and brother are the same. Her life seemed to be a series of rejections and betrayals and each one I guess made her more defensive, more reserved as though protecting herself from the next heartbreak. She was fiercely competitive at everything she did, always striving to do each task, each challenge to utter perfection and, of course, always failing to reach the standard she aspired to. I long ago discovered that perfection doesn't actually exist; it's always one step beyond your best achievement. She never did realise that so for all the time she had her mental faculties she was living a life of failure, a failure more imagined than real.
I can't blame her in any way for the person she was, we are all just the product of our upbringings and whilst we can change it really needs someone special to be able to guide you through those changes. Sadly my mother never found that someone special for my father most certainly was not it.
The only part of her life with which she felt in any way satisfied was her ballroom dancing years. She was indeed a very good dancer, good enough to turn professional but in those days - the late fifties and early sixties - married mothers of three children were pretty much expected to "do their duty" raising their brood.
So to see this hard, competitive, perfectionist woman as she is now, bewildered, fragile, so vulnerable, liable to tears at any time is truly tragic.
My mother and father who raised me have gone. They've left this world never to return. I feel as though I have already grieved for the loss of both parents - although I suspect it is in reality an ongoing process - and realise I'll never again be able to talk to the couple who raised me about my life, their lives or any of the myriad things families share between them.
This is going to sound so cruel but it's not intended. It really is as though my parents have died but their carcasses just don't know it's time to quit. In both of their conditions if they had been family pets we would have had them put to sleep some time ago. But that's not an option with humans, is it? Society expects us to sustain their frail bodies for as long as possible.
Ask the question in the context of should they be put out of their misery and it makes it so much tougher to know what is best for them. Carole and I talk frequently about this and the truth is we are not sure they are suffering any unhappiness. They are most certainly not in any distress. They are in a blissfully unaware existence.
I describe their lives as being like the ball in a pinball machine - they are just bouncing off the bumpers and flippers of life with absolutely no sense of direction, purpose or even a sense of being. They just are. Just are what? I have no real idea. They seem to be existing in a mental vacuum.
Inevitably Carole and I have discussed at various stages what we will do if either or both of them suffer severe physical illnesses, strokes or heart attacks, for instance. Fairly early on I questioned the point in prolonging the lives of either of them in those circumstances, lives which far from ever getting any better are deteriorating continuously and devastatingly and will continue to do so. Carole argued for some time that for as long as they were content in the life they are living they should be allowed to be treated for a longer life.
I don't for one second think either Carole or I were right or wrong although our views were poles apart. They were just our own personal judgements of the task we feared we would be called on to undertake at some stage.
More recently we have started to agree that prolonging life would now no longer be beneficial to either of them - particularly my mother - and therefore in the event of such a severe and catastrophic illness we would ask that no attempt is made of resuscitation. Carole is more involved in the day to day lives of our parents if for no other reason than she lives much nearer to them so there is every chance she will be the one first asked to make the decision. Unfortunately for Carole she has suffered enormously from guilt all the way through my parents' descent in to this nether world they now inhabit.
She was asked by my mother to promise she would never be put in to a care home and would never be made to leave Epsom, the only town she ever lived in. My mother's eventual inability to look after herself meant that Carole was forced to do both things, and at that time because she and I were estranged - family difficulties we've probably all experienced - she was forced to make those decisions alone. She and I can both clearly see there really was no viable alternative. Nobody who lived close to my mother was willing or able to care for her, both Carole and I lived more than one hundred miles from her and she had already reached the stage where she would wonder the streets at night aimlessly. She had also lost a ridiculous amount of weight because it never occurred to her to feed herself.
Carole had hoped by moving my mum to the New Forest she would share more time with her family. Carole and her three children would be able to visit her on a regular basis, have my mother come to their house for, say, Sunday dinner and also be able to take her out for day trips to the coast, garden centres, etc. And that is what they did.
The one thing Carole hadn't bargained for was the brevity of sharing these moments with our mother. Within twelve months she had deteriorated to the point where taking her out of the home, even for a few hours, would cause her to be disorientated and far, far from her comfort zone. And, of course, her incontinence made it less than practical.
None of this prevents Carole being wracked by this dreadful feeling of guilt, though, and I know that despite my protestations that there really was no better alternative there is nothing I can do or say to help her cope with what she feels.
For that reason I have stressed upon Carole that if and when the time should arrive that a decision has to be made about either parents' long term future that I will be more than willing to make any decision and relieve her of that burden. She really doesn't deserve to carry any additional guilt for making that decision, she already has more than her share. I guess there is a real chance that my courage and strength could leave me at that moment but for now I feel I would be capable of making the choice that really is best for whichever parent and for everyone else involved. It's a situation I have imagined and run through in my mind many times.
So, having spent odd moments over my adult years wondering how I would cope when I got the phone call or message telling me that one of my parents had died or was dying I find myself now thinking of having to make the choice to let them go and, if I am to be totally honest I also spending a lot of time wishing so much they would both just go to sleep and never wake up.
I see no meaningful future for either of them, no sense or purpose, as we know it, in their worlds, no sharing of any thoughts or feelings with their family because they are at the stage where they don't know who their family is. Just a worsening of an already sad, pointless and meaningless existence.
My dad is still in some ways the same person he ever was but a hollowed out version, if that makes sense. The core of him, the essence of the man is gone. All we have left is the shell. My mum is the complete opposite of the woman she used to be and has no resemblance emotionally or personally to the woman who raised us, just in appearance.
I wish their lives and the futility of those lives would come to a decent end. They weren't the feelings I ever imagined I would have and I am so aware I feel no guilt or shame having them. Will I when the inevitable ending comes? I hope not, really I do. But I'm aware it is possible. All those times I pondered how I would cope with their demise I had never imagined I would actually end up wishing my parents dead but dementia is a particularly cruel and heartless ending to anyone's life.
Dementia – it just eats away the soul.
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