Nigel, MND and Me (13) Nigel's Cure

September 2016 – The Decision

Six lorazapam tablets remain untouched on the table beside Nigel’s chair.

He’s sleeping deeply.   He appears calm. 

Pleased, but surprised, I leave him in peace.   His sleep is normally disturbed and erratic.  He’s constantly on edge, fretful.   Invariably, at least two calming lorazapam are needed to settle him.   These tablets have become his little helpers.   If we are expecting a visitor, he will take two in anticipation; if he’s going out, to the dentist, perhaps, it’s four. 

He takes them to relieve the endless, dispiriting feeling of desolation as this cruel disease’s relentless incarceration continues and to assuage the ever-present threat of horrific and painful spasms.    If he’s having a bad day, nine can be swallowed before lunchtime.

‘I’m concerned that he’ll become immune to them,’ says the doctor.  ‘This is helpful end-of-life medication, and he would derive no benefit.’

Well, for the moment, he needs them during his life.  We’ll worry about the end at the end.

I hear him stirring, so I quickly make us a cuppa.  We’ll no doubt perform what is now our afternoon tele-watching ritual. 

‘What do you fancy on the box?’ I ask, placing his cup of tea on the table next to him.

No response.

‘You OK?’

He nods, smiling a little.

‘What’s going on?’

Something has changed.  He seems different.  Calm.  In control.  His eyes don’t have that troubled look.   There’s something new there.  Determination?  No, more than that.  He’s triumphant.

‘I have the cure,’ he says.

I pause a moment, puzzled.   Suddenly, I’m concerned.   A sense of fear creeps into my mind.  I know Nigel.   Tentatively, I sit on the edge of the settee.  I force myself to ask the question – even though I already know the answer. 

‘What do you mean?’ I ask, my voice just a whisper.

‘I’m going to DIGNITAS,’ he says.

For what seems like a very long time, in silence, I hold his gaze. 

‘Are you sure?’

‘Yes.’

Of course he’s sure.  I know that.  I can see it in his face.  Nigel wouldn’t make such a decision lightly.

‘Have you had enough?’  I ask, stupidly.  Who wouldn’t have had enough?  And yet, because Nigel has demonstrated nothing but incredible courage and steadfastly maintained his tremendous sense of humour, despite the devastating effects of this dreadful disease, it is hard to recognize when such a man would determine that he has had enough.

‘It’s not so much that,’ he explains, ‘I refuse to let it annihilate me.  And I think it will if I don’t stop it.  I won’t give it the pleasure.  I want to get in first.’

I understand.  There has been a change in how the disease is affecting Nigel.  These last few arduous months have seen it threaten to steal his spirit.  The laughter has almost stopped.  The disease is starting to eat away at his resolve.  It has begun to change him.  Nigel can cope with any physical disability, but he cannot be denied his sense of self.

‘I want to die while I’m happy.  I want to die while I can still smile.’

‘Oh Nigel,’ I sob, tears stinging my eyes.  I cross the room to his chair, fold him in my arms and hold him close. 

And, for only the second time since his diagnosis, he allows himself to weep.   

The Preparations

First, you become a member.  DIGNITAS is an organization, not, as is often stated, a clinic.  You don’t need to be terminally ill, you may not be contemplating suicide, you can become a member simply because you share the organization’s values.

We pour over the literature.  We watch every video on YouTube of people who have been to DIGNITAS.   We read every article that has been written about it. 

There is much to do.   Nigel composes the letter requesting an accompanied suicide.   This letter must explain his condition, the prognosis, and the reasons behind the request.   A significant amount of supporting documentation is required: comprehensive medical reports; certificates; even dental records.  The process is complex, thorough and professional. 

A file is opened, every email back and forth to DIGNITAS is printed and arranged in date order.  When Nigel hears the clatter of the letterbox he sends me scurrying to retrieve the post, to see if the next stage has been finalized.

It consumes us.  It’s all we talk about.  All this is carried out in the afternoons.   In secret.  When we are alone. 

Only family, a few close friends, the GP and Hospice staff are aware of Nigel’s plans.

‘It feels just like it did when you told us the diagnosis,’ says Craig, as the overwhelming grief felt ten years ago comes charging back.

Ellie and Becky react in the same way.

Nigel has been ill for such a long time.  We are so accustomed to it that we assume things will be like this forever.  We struggle to imagine how things could change.  But now, suddenly, we know that it will soon be over. 

Just before Christmas, Nigel receives the letter that gives him the ‘provisional green light’.  This means that DIGNITAS has agreed to help him, should he decide to go through with it.  The doctor who has considered his case will, provisionally, write the prescription for the lethal drug.

Nigel reacts like he’s just been given the best Christmas present in his life.

‘I want to go in April,’ he says.

‘Why April?’

‘It’ll be warmer.  Give the sun chance to shine.  Plus, if I go after the 6^th it’ll be better for tax.’

‘Are you kidding? Only you would influence the day you die because of tax advantages! ’

‘Well, why not?’ he says, laughing.

Now it’s real.  It’s happening.  We have just a few short months.

‘Are you absolutely sure you want to do this Nigel?’  I ask, as I have every day since September.   But now it looks certain to happen, I need to hear his answer every day.

‘Definitely. Yes, I really do.’

‘OK.’

‘Are you with me on this?’

‘Of course I am.  I do understand.  It’s just so … final.  I’m going to lose you.  And I love you.’

‘I know, but it’s the best thing for me.’

‘I know,’ I say, fully accepting the situation.

He takes my hand and raises it to his lips to kiss it.

‘You’re the only one who could talk me out of it, you know.’

‘Really?’

The weight of this knowledge hangs like an anchor round my neck.  Should I attempt to talk him out of it?  Should I persuade him to change his mind?  To stay with us a little longer?  To wait for a natural death?   Would I be doing that for him, or for me?  And in so doing, would I condemn him to endure the torture of a living death?  Could I watch him shrivel as his spirit is ripped from him?  Could I look into his haunted eyes when there is nothing reflected in them but anguish?

‘Will you try to talk me out of it?’ he says.

‘No,’ I say, as I gently kiss his head.  ‘I love you too much.’

The Laughter is Back

Nigel is out of jail.  His decision has freed him.  And he is back.

‘I’ve never seen you so calm,’ says the doctor, genuinely amazed at the change in him. 

Naturally, as a doctor, she can’t say that she agrees with Nigel’s decision to go to DIGNITAS, but neither does she say that she disagrees.

‘You appear to have taken back control,’ she says.

And he most certainly has. 

Socializing with family and friends is back on the agenda.   The almost forgotten Saturday afternoon rugby sessions, when a few like-minded mates come to the house and enjoy some easily prepared ‘pub-grub’ whilst watching a few games with Nigel, has been reinstated.

We are planning a spectacular Christmas.   There’ll be fourteen for dinner.   Last Christmas Nigel couldn’t bear the thought of even family being in the house for long.

He has renewed vigour – a sense of purpose.

The Carers, none of whom yet know of Nigel’s decision, are utterly bemused by this transformation.  They are astonished at how significantly changed he is.   He is enjoying his days, not tolerating them.  His appetite for food has returned, so much so, that, after years of following a diet of soft food, he is requesting and relishing fillet steak.

He has taken not one single lorazapam, since he made his decision.  Not one.  And no longer, when he goes to bed, does he feel the need to swallow three large gulps of morphine. 

But he still has MND.  And he is getting weaker.  Physically, at least.

Mentally, he’s stronger.   And the laughter is back.    

The Recce.

So, how do we get there?  Nigel has barely been out of the house for years.   It’s a challenge getting to the end of the street.    It used to be the case that any kind of long journey was out of the question, because Nigel could never be far from a toilet.  However, incongruously, the fitting of the catheter has afforded him much more freedom.  Still, I am concerned.   The only place he feels comfortable is in bed and this is where he is spending more and more time.   The truth is, he’s too ill to travel.

But Nigel is nothing if not determined.  Nothing will deter him.  He will find the strength and the means, of that I am certain.

‘Will you come with me?’ asks Nigel of the kids.

Try stopping them.

‘Let’s do it in style,’ says Nigel.  ‘Let’s charter a private jet.’

An attractive option and certainly one that we pursue enthusiastically, until it becomes clear that Nigel would need to be able to transfer from his wheelchair to sit on a seat in the cabin.  Out of the question.  He’s far too disabled.

 Train then?

‘We need a recce,’ suggests Becky, a born organizer.  ‘We should test the journey.  See how disabled-friendly it is.’

As Ellie’s skills are best utilized in caring for Nigel, Becky and I elect to carry out the recce.

We consider whether, for realism, one of us should go in a wheelchair, but I know the dimensions of Nigel’s chair and every aspect of his disability so I decide against it.  We arm ourselves instead, with a specially commissioned notebook and a sturdy tape measure.  We will walk the disabled access route of every station; measure every gap and doorway and question appropriate ‘assistance’ staff along the way.  We book trains that mirror the times we plan to travel when we go ‘for real’.  Fifteen hours.  First Class all the way.

We get as far as York.   I search in vain for the wheelchair space as we hurtle towards London. 

‘At the other end of the train, if there is one.’ I am less than helpfully informed.  She goes onto explain that ‘Grand Central’ has two types of train – she does explain the difference - but I stop listening.  Clearly this is not the type I need. 

Lesson one.  Book a Virgin train.

King’s Cross is a breeze, a quick and easy wheelchair route to St Pancras and a short wait for Eurostar to take us to Paris.   The Eurostar wheelchair space is perfect, the disabled toilet, big enough for us to take Nigel where we can discretely empty his catheter bag.

The gates of hell gape open and gorge its ghastly horde of horrible humanity onto the Hades that is Paris.  We have ninety minutes to cross it.  The taxi, booked because it boasts wheelchair accessible vehicles, due to take us from one station to another to make the connection to Zurich, arrives late.   It inches, agonizingly slowly through the cacophony of chaos. 

The snake of traffic at the Gare de Lyon is so atrociously long that we are forced to alight from the taxi and finish the journey on foot.  There are many, many steps and impatient, preposterous people, intent on perpetuating the pandemonium, blindly battering all before them with their bags. 

This is too much for Nigel.  He can’t do this.

‘There are too many moving parts,’ says Becky.  If one thing goes wrong at any point, Dad’s stuffed.’

It’s not going to happen.  We really don’t need to bother getting the next train to Zurich, but we do. 

As if to reinforce our decision, the doorway to the carriage displaying a wheelchair symbol is narrowed significantly because this is also where luggage is stored.  Even without the luggage, Nigel’s chair won’t get through the gap.

We arrive in Zurich shortly before midnight.  Eleven hours later we are sitting in the same carriage, preparing to do it all again on the return. 

We arrive home knackered, disheartened and dejected.  

Thanks however to the magic of the mobile phone, our unsatisfactory recce has been fully communicated to the rest of the family.  Our disappointment is short-lived.  Ellie has found a Motorhome for hire, fully equipped for disabled use, sporting a profiling bed, ceiling hoist and toilet. 

Why didn’t we think of that in the first place! 

A Nice Little Infection.

Nigel’s appointment with death is in the diary.  But death is no longer the gruesome phantom of the Grim Reaper.  Death is his friend.

Nigel spends most of his days in bed now.  Once his Carers have showered him, he goes back to bed and stays there until three or four in the afternoon, when I get him up and give him his tea.  He sleeps most of the day.  He’s withdrawing from life, moving closer to death.

The doctor and nurse from the Hospice visit every few weeks.  Each visit she asks if he is still determined to go to DIGNITAS.  She is concerned, ironically, about his health – about his ability to make the journey.  And she tries again, to reassure Nigel that her role is to not unnecessarily prolong his life, but to ensure instead that the end of his life is as pain free as possible.

‘Your condition has deteriorated significantly,’ she says.  ‘If you were to get an infection, we don’t have to treat it.  We can just keep you comfortable.  And I suspect, if left alone, the infection would kill you.’

‘Have you got one in your bag?  Nigel asks, smiling.

‘What?’

‘An infection.’

‘No.’

‘Then I’m going to DIGNITAS.’

Before they leave, Nigel thanks them for the care and support they and everyone at the Hospice have given him over the last ten years.  You have been marvellous, he says.  Resigned, the Doctor wishes us well, requests that I keep them informed, and offers me counselling.  The nurse leaves in tears.

 ‘Are you sure you want to go through with it?’ I ask, as usual.  ‘A natural death would be a good thing wouldn’t it?’

‘Yes, but there’s no saying when that will be is there?  It’s not likely that a nice little infection will come along just when I need it and do me in just when it suits me is it?  Can’t risk it.  I want to die while I’m happy and smiling.  Not when this disease has had me trapped for years inside a screaming useless body.’

‘OK.’

‘And anyway, I’m looking forward to our ‘City Break’! Five go to Zurich!’

‘You’re amazing Nige,’ I say, astounded at his humour and his courage, ‘I always knew you were, but you actually surprise even me.  So come on, buggerlugs, let’s have you out of bed.’

‘Thank you,’ he says, as I manoeuvre the hoist into position in order to lower him into his chair.

‘You’re welcome.’

‘No, I mean, thank you for being my wife all these years.  You’ve been wonderful.  You’ve made me very happy.’

This unexpected expression of tenderness takes me by surprise and a surge of love locks in my throat.  Flustered, I busy myself by releasing the sling from the hoist.  It proves a welcome distraction and forces me to fight the swell of tears that suddenly blinds me.

‘And thanks for looking after me.  This wasn’t supposed to happen was it?’ he says.  ‘It wasn’t part of the plan.  I’m sorry.’

Sorry.  As if he could have prevented any of this.

As he’s settled onto his chair, I cradle him close to my chest and gently kiss his head.  It smells fresh and clean - Jean Paul Gaultier being today’s chosen aftershave.  He wraps his arms around my waist and holds me, as tightly as he can, and gently, we sway together and share our sorrow as we think of what might have been, of what we have lost.

As I hold him, I am reminded again of how immense will be the loss I have yet to suffer.

1 April 2017 – Count Down

‘I wish I’d asked Ellie to make me an Advent Calendar,’ says Nigel as I add some vital medication to the pile of stuff lined up on the sideboard next to his bed, waiting to be checked off before I commence packing.

‘What do you mean?’

‘Well,’ he says, laughing now, ‘I could open a new door every day as I count down to ‘D’ day.’

‘’D’ day?’

‘Yeah – Dying day.’

‘Bloody hell, Nige.’

‘There could be a picture of the Grim Reaper behind one door, a gravestone behind another, a bottle of poison behind another - until eventually, on the 25^th - a coffin.’

‘My God, what are you like?’ I say, shaking my head, smiling, in spite of myself, at the sound of his uncontrollable giggling.  ‘Only you would think of that.  Only you.  You actually seem like you’re looking forward to it.’

‘I am,’ he says, without hesitation.    ‘It’s time.  Time to go.  I can feel it.’

I don’t argue.  Nobody knows what’s happening to Nigel’s body more than Nigel.  He is much weaker now and he knows that if he doesn’t go soon he won’t be able to.

Every day, as yet more of his physical strength deserts him, his inner strength flourishes.  He is becoming ever more focused on the challenge he faces, and utterly prepared to willingly embrace the ultimate outcome. 

Now that all arrangements are in place, our afternoons, him directing the proceedings from his bed, are spent making lists of tasks I must perform afterwards.  Inform the solicitor, banks, SKY, BT, the Golf Club … and so on.  He is still trying to anticipate everything, trying to look after me, even after he’s gone.

He composes his final, moving message to his friends on Facebook, which will be posted the day he dies. 

Nigel takes the lead in planning his memorial ‘do’.   His message to the congregation takes hours of thoughtful preparation.  As a family, we choose the music - Pink Floyd and Bob Dylan.  He approves the venue, the order of service, and even meets the Celebrant who will conduct the service. 

‘Tell everybody to wear yellow,’ he says.

‘What!’ I gasp, horrified.  ‘There’s not a woman in the world who would want to wear yellow!’

‘I know,’ he grins, wickedly. 

‘What about just a touch of yellow?’ I ask, seeking a compromise. 

‘Ok then, let everybody wear what they want, but a bit of yellow.  A bit of sunshine.’

The ‘Goodbyes’

The diary is full.  Family and a few trusted friends are booked in to say ‘goodbye’.  Urgency and reluctance exist in equal measure.  Of course this is unknown territory for us all.  Honoured and terrified at the same time, those who have an invitation probably liken such a visit to an audience with the Pope. 

There are so many ‘lasts’.   The last Friday visit from his good friend – leaving the house with a list of things for him to do after the event; the last Saturday session watching the rugby with his fellow fans.  They will miss those laughter-filled days.  A concluding business meeting with our long-standing and entrusted accountant, who leaves with clear instructions to safeguard my financial status.   The last visits from his nephews, brothers-in-law, sisters-in-law, mum-in-law, extended family; a private message via Messenger from his niece, and the final, difficult and emotional farewell from his business partner of thirty years.

The awkward, ‘what are you supposed to say?’ question evaporates as Nigel talks of inconsequential, everyday things.  He puts everyone at ease.   He jokes, laughs, shares some special memories and behaves completely normally until it’s time for that final kiss, that final handshake, that final goodbye.   To help you on your way, Nigel drags a funny remark, quip or joke from god knows where. 

‘He makes it so easy,’ says his nephew as he departs.

He laughingly asks another family member, a tattoo artist, if he has the time to tattoo the words ‘may contain nuts’ on his scrotum.   Like others before and after him, he is left with nothing to do but plant a smile upon his face as he shakes his head in admiration and disbelief.  

I offer comfort to people as they leave.  Each one struggles to keep some degree of composure.  Some need a hug.  Some hold it together until they have fled the house; others leave quite unable to quell the tears.  But all feel better on their departure than they did on their arrival.  Glad they came, happy to have shared this precious time and blessed to carry with them the enduring memory of the sound of Nigel’s laughter.

A few find it impossible to utter the words that fill their hearts and follow up their visit with a private email or a note or card to Nigel, where they tell him, eloquently and deeply, how much he means to them and the impact he has had on their lives.

The final week is reserved for immediate family.   It’s important for us to make each visit a little more special.  We share the evening together.  I provide food or we order a take-away.  We have a few drinks - Nigel has a beer, sometimes a whisky, sometimes both.   Conversation flows naturally and there is always laughter.   Once Nigel’s Carers have helped him to bed, each individual family member has the opportunity to visit Nigel in the ‘West Wing’, where each one can say a personal, agonizing and heartfelt goodbye.

And of course, each Carer, who are all now regarded as part of the family, receive, in an overwhelmingly emotional goodbye as their final shift is completed, Nigel’s grateful thanks for helping to make his last few years bearable.

22 April 2017 - Leaving Day

The family is gathered.  Here to see us off.  The motorhome is packed and ready.

It’s time to go.

Kisses, handshakes and hugs all round. 

‘Where’s Bodger?’ he says.

Becky brings Bodger from the kitchen and holds him on Nigel’s knee so he can stroke him for the very last time.   Not only me has tears in their eyes.  ‘Look after him, won’t you?’

Nigel heads for the ramp.

‘Thanks for being my family,’ he says to the tearful gathering.  ‘It’s been great.  But I’m off in now.  Look after each other.’

They accompany us outside and crowd the pavement, determined to be with him, to keep sight of him, for as long as they possibly can.

Nigel’s wheelchair is anchored securely.  Becky sits in the front along with her husband Daz who is to do most of the driving.  Craig, Ellie and I take our seats in the back. 

Nigel is excited.  As if we’re about to set off on holiday.  His animation is infectious.  It’s easy to become caught up in the atmosphere and forget what is actually happening.  He waves at everybody standing outside the motorhome.  They wave back, enthusiastically.  Smiling.  Crying.  The enormity of the situation is lost on nobody.

Just before we leave, Nigel’s eyes meet with his brother Les’.  Their gaze locks for but a single second.  Then, after the slightest moment, they exchange an almost imperceptible nod.  That simple nod holds all of their past, all of their understanding.   It is one of the most profoundly touching gestures I have ever seen. 

‘Come on, let’s do it,’ he says to Daz.

And we’re off.

Never having been much of a camping fan, I’m surprised at the noise, at the rattle of pots and pans and the degree of swaying motion – like being on a small boat in a rough sea.  I had foolishly imagined being able to wander about, make a cup of tea and a sandwich and generally feel at home.  Not a bit of it.  In your seat - seatbelt on – is the only way to travel safely inside one of these things.

So it is for the next twenty gruelling hours.  Nigel sleeps most of the way, Craig possibly fifty-percent of it, the rest of us, not at all.  Ellie, like Daz, an experienced driver on Europe’s motorways relieves him of his driving duties for a few short hours but he rests rather than sleeps.

23 April 2017 - The Hotel

It is a disheveled, bleary-eyed, bunch of weary travellers that arrive at Zurich’s most luxurious – ‘celebrities stay here don’t you know’ - hotel, at about three-o-clock the following day.

‘Bloody hell!  The car park is full of Porches and Bentleys!  You can’t take this thing in there!’ cries Ellie in horror.

‘We must look like tramps in ‘Breaking Bad’s’ meth wagon,’ laughs Craig, alighting from the vehicle with the intention of guiding Daz into the crowded car park.

A horrified, trying desperately to remain polite, Concierge, puts a stop to that.  Craig quickly explains that we are in fact, guests, rather than gypsies who have wandered unwittingly away from the allocated laybys for waifs and strays.  The Concierge, whose training in coping with all manner of patrons is clearly superb, skillfully directs us to park this abomination at the back.

Undisguised relief floods the Concierge’s features when I explain that ‘our driver’ is not actually staying for more than half-an-hour, but he would merely like some refreshment before his arduous journey recommences.  Poor Daz.

We take our stinking bodies into the sumptuous and lavish lobby for a complimentary drink before being ushered to our rooms.

The addition of a mobile hoist and disabled shower chair that I had ordered separately for Nigel are there in the room that boasts ‘disabled facilities.’   But there is too much furniture, a settee and two armchairs, which will restrict Nigel’s movement in his wheelchair, and no grab rail in the toilet.  Both are dealt with immediately.  I also request six more pillows that should enable us to prop Nigel up safely on the bed. 

It doesn’t matter how much you are prepared to pay, how exclusive the hotel, how talented your Carer … when Nigel is taken away from his fully equipped, customized, disabled-compatible haven that he enjoys at home, the devastating degree of his disabilities become evident.

This isn’t going to be easy, I think, a little anxiously.  One look at Ellie’s face tells me she’s thinking the same. 

But nothing can dampen Nigel’s spirits.

‘We’re gonna get to sleep in the same bed for the first time in years,’ he grins, a mischievous glint dancing in his eyes.

‘Don’t you be getting any ideas,’ I laugh.

The Doctor

He’s young.  About thirty-five.  Quite a bit younger than I expected.  Although why I should have formulated any expectations I can’t imagine. 

He appears nervous.  Perhaps that’s our fault.  After all, we have him surrounded. 

In anticipation of his visit, we place a single dining chair for his use in the space the removed furniture once occupied.  He’s exactly on time.  Well, the Swiss are punctual I understand.  Craig, Ellie and Becky are perched on the edge of the bed, whilst Nigel, in his wheelchair, flanks one side of him, me the other.  All we need is a spotlight and the theme tune to ‘Mastermind’ and we can intimidate him fully.

This is of course all part of the procedure.  Nigel must see the same doctor twice.  First tonight, and again tomorrow.  

I assume he’s the doctor who gave Nigel the ‘green light’.  He seems to know his story.

He apologizes for his English – which is perfect – and says,

‘Mr Casson, I must ask you some questions.  Please answer truthfully.’

‘Of course,’ says Nigel.

‘OK, OK, OK,’ says the Doctor, in a faltering, broken and slightly breathless manner, as if unsure about what to say.

I exchange glances with the kids.  We hang on his every word.

‘Do you understand exactly what it is that you have requested to happen?’

‘Yes.’

‘OK, OK, OK.’ 

Perhaps he really is nervous.   ‘Do you understand what will happen if it goes ahead?’

‘Yes.’

More OKs.

‘Have you been coerced in any way in making this request?

‘No.’

‘OK, OK, OK.’ 

Getting a tad irritating,

‘Are you sure?’

‘Yes.’

‘OK,’ he says, as we now expect, and stands up and shakes Nigel’s hand.  ‘I’ll see you again tomorrow.’

‘OK,’ echoes Nigel, smiling.  ‘Thank you.’

I see him to the door and thank him for coming.

‘Is that it?’ says Craig.

‘I thought he was going to cry,’ says Becky.

‘Maybe it’s his first time,’ says Ellie.

‘Not a bad hourly rate,’ says Nigel, who still hasn’t got over the cost of the doctor’s visits.

‘Let’s have a drink,’ is my suggestion.

Our perfect day.

It’s a glorious day.  The hotel’s golf course is soaked in shimmering sunshine, the lake in the distance, a sparkling jewel nestled amongst the mountains, glistens like glass.

We occupy a whole corner section of the exquisitely furnished and calming terrace where we eat a delicious lunch washed down with a simply divine wine.

‘I think we should order another bottle of that,’ says Nigel. 

Nobody argues.  It sounds like an excellent plan for the afternoon. 

‘Mr Personality, wasn’t so bad today, was he?’ I say, the wine perhaps having pacified any potential criticism that I might have made regarding the doctor’s second visit this morning.  He did seem a little more confident as he asked the same questions of Nigel as he had the previous evening.   

‘I will write the prescription today,’ he said.

‘Thank you,’ said Nigel, pleased.  Obviously passed the test.

‘Look after your family,’ the doctor said to me, kindly but unnecessarily, as I accompanied him to the door.

‘He still looked a bit like he was going to cry though,’ says Becky. 

We while away the rest of the afternoon, enjoying the views, the company and yet another bottle of wine, until, reluctantly we must leave this lovely terrace to return to our room.  The escort is due any minute.

The escort is one of two people from DIGNITAS who will be with Nigel at his accompanied suicide tomorrow.

Now he really is Mr Personality, I think, as an enthusiastic, smiling Kurt introduces himself to all of us.  He is around fifty, with a craggy but animated face and kind, intelligent eyes.  He is dressed casually, has a relaxed demeanor and smells faintly of tobacco.   For some reason I have a vision of him tramping round India in flip-flops.  He looks the type.

His English is, of course, perfect.

He warmly shakes Nigel’s hand.

‘We find that it helps people to meet with one of us the day before,’ he explains thoughtfully.

Always nice to meet your murderer, I think, unfairly.

‘It can be quite daunting of course, and it’s so much better if you can feel relaxed.’

Following a few minutes of polite chitchat Kurt then asks very similar questions of Nigel as the doctor and he goes on to explain what will happen tomorrow.  There is a discussion regarding how Nigel intends to take the barbiturate.   Swallow? Intravenously?  Gastric tube?  He emphasizes that Nigel must be able to do it himself.  He cannot be helped.

‘I knew this would come in useful for something,’ says Nigel as he lifts his shirt and shows Kurt the gastric tube into his stomach.

‘Excellent,’ says Kurt, examining it.  ‘Yes, we have something that will connect the syringe easily to that.

All smiles from Nigel.

‘Can you press a button?’

‘Yes,’

‘Excellent.’

I catch Craig’s eye.  He looks at me as it to say, ‘This is so bloody weird …’

I have to agree.

‘So, eleven o-clock tomorrow.  I’ll see you all then,’

We remain in the room for the rest of the evening, acutely aware that this is our final night, together, as a family.   We laugh a lot, share some precious memories, and try not to talk about tomorrow.   Nigel tells Craig, Ellie and Becky, his three kids lounging on the bed, how proud he is of them, how much he loves them.  He tells us all not to be sad.  To try and be happy, when he is gone.

He reinforces his own happiness at his decision.  He is ready.  This is what he wants.

We have all prepared a personal tribute to Nigel for his memorial do and we share these with him now.   Then Nigel shares with us the message he has written for the congregation and none of us can prevent the tears from flowing freely.

It has been a lovely day.  A day filled with laughter and tears.  A special, unique day that has strengthened the bond we share and prepared us for what we will face tomorrow.   We will never forget it. 

Our perfect day.

25 April 2017

‘Good morning, darling.  How do you feel?’

‘I feel good,’ says Nigel.

‘Do you feel nervous?’

‘Not really.’

There is no sunshine today.  The dark, leaden sky obscures the mountains and hangs heavily and gloomily above the golf course. 

It seems appropriate.

Craig, Ellie and Becky join us just as room service arrives with a magnificent, mouth-watering breakfast.

‘A change in the weather,’ says Nigel pleasantly to the waitress as she sets the table.

‘Yes,’ she smiles, ‘Swiss weather is always changing – it’s like a girl’s mood.’

We pick at the food.  None of us can face it.

Nigel asks Ellie if she would mind giving him a shower.   A shower relaxes him.  He thanks her for the care she has given in the past, but especially on this trip.

‘You’ve been an absolute boon,’ he says.

‘Eh?’ says Ellie, offended.  She’s never heard the expression before and instantly assumes it’s one of her Dad’s insults.

He laughs as he explains it to her.  It lightens the mood.

We dress Nigel carefully.  He wants to look nice.  His chosen T-shirt, brought especially to be worn today, bears the words:

‘Made in England.  1954.’

‘Right, let’s do it,’ he says, when we are all ready.

Becky takes a selfie of us all as we head for the lobby to wait for the taxi.  Our final family photograph.

The taxis arrive on time.  The wheelchair accessible taxi for Nigel and me is small and it takes some shoving to get Nigel’s big chair securely inside it. 

‘Watch his tube!’ Craig cries in a bit of a panic as the driver straps the seat belt tightly across his stomach.   ‘He’s going to need that.’

Our driver doesn’t speak English but that doesn’t prevent him from chattering away in all the other languages that he does actually speak whilst he cheerfully carries us to our destination.  I recognize a word that sounds very much like ‘physiotherapy’ and realize that he’s referring to the address given to us by DIGNITAS.  Apparently the place where we are going used to be a physiotherapy studio.  The driver believes it still is.

Suddenly, in the skies above us, a united formation of jets, like the Red Arrows, sweep in a dramatic arc right in front of the car.    ‘Look!  Look!’ says our vivacious driver, in one of his languages.  I guess at the words ‘military’ and ‘training.’

I like to think the display was a salute to Nigel.

Shortly, the clouds having given way to rain, we arrive at the blue house.  It is a unit within an industrial estate, just beyond Lidl.

Kurt is waiting for us.  He waves.  Smiles.

I pay the driver and he hands me his card, pointing at the phone number.  For the return trip, he signals.  I nod politely and smile.  If only.

‘Did you see the jets?’ asks Craig.

‘Yes, they were great.’

‘We thought it was just for you Dad,’ he says.

Kurt cordially welcomes us all and shakes Nigel’s hand.  He guides us inside the building and introduces us to Suzanne, his colleague.  She looks like somebody’s Mum.  She’s wearing a pale blue twin-set and A-line skirt.  Her smile is warm and genuine as she says ‘hello’ to each of us in turn.

There is nothing clinical about the place.  It is clean and simply furnished.  A small settee and chairs are grouped around a coffee table bearing a jug of water, drinking glasses and Swiss chocolates.  There is a bed to the side, a scenic picture on the wall, and a dining table at the back.   

Suzanne offers us tea or coffee. 

I request a coffee.

It’s all very odd.

Kurt invites us to sit as Nigel wheels his way into the centre of the room.   Becky pours a glass of water.   We look at each other.  Don’t know quite what to say.  Nigel raises his eyebrows and pulls the kind of face you pull when you’ve just done something a bit naughty – like fart in a lift.

‘OK, this is what is going to happen,’ says Kurt, getting down to business.

He explains that there is paperwork to be done first and confirms with Nigel that he can still sign his name, or make a mark.  When that’s done, assuming Nigel wants to go ahead with the accompanied suicide (he can still change his mind), an anti-emetic drug will be administered via Nigel’s tube.  This prevents him from being sick once he takes the lethal drug.    Whilst waiting for the anti-emetic to take effect, we will have 20 to 30 minutes together, where Kurt and Suzanne will leave us alone and wait in the other room until Nigel is ready.   There is a speaker on the table that can receive the music that Nigel wants to listen to via Bluetooth.

We all nod, politely.  As if we had just been given the housekeeping instructions for the fire exits and loos.

So it begins.

Kurt then asks Nigel, yet again, if he wants to do this today.

‘Yes.’

‘Do you understand what will happen?’

‘Yes.’

‘After a few minutes, you will go to sleep and you will not wake up.’

‘Yes.’

‘It always works.  It has never failed.’

‘Good.’

‘Is this what you want?’

‘Yes.’

I exchange that, ‘this is bloody weird’ look with the kids.

It takes Nigel five interminable minutes to sign the paperwork.  He can barely hold a pen.  He could have made it easier for himself by simply scribbling a mark, but no, he painstakingly attempts a flourishing signature on every single page.

The anti-emetic is administered. 

‘Call us when you’re ready,’ says Kurt as he and Suzanne disappear.

This is it.  It’s happening.

‘Anybody want a chocolate?’ says someone, filling the silence.

‘What music do you want Nigel?’ I ask, now we know that the last thing anybody wants is a chocolate.

‘What about Enigma?’

‘That’s all we bloody need,’ says Craig.

Ellie finds Enigma on her phone and sends it the speaker on the table.  The strangely soothing and poignant strains of ‘Sadness’ fill the room.

This is our time.  Now.  Our moment.  Our last ‘goodbye.’

Time for each one of us to hold him, to love him, to help him on his way.  Time to share with him our final, personal message, the last words that he will ever hear.

Craig first.  Then Ellie.  Then Becky.  Then me.

Those twenty or thirty minutes fly by much too quickly.  We can’t hold it together any more.  We can’t hang onto our composure.  Craig cradles his sisters in his arms and tries to comfort them.  We hold each other’s hands, stroke each other’s backs in the hope that the touch, the gesture, will help.

‘Bring them back in,’ says Nigel.  ‘I’m ready.’

Kurt and Suzanne return with a contraption bearing a syringe that holds the lethal barbiturate and places it on a table within Nigel’s reach.  Kurt attaches the tube leading from the syringe into Nigel’s gastric tube.

‘When you’re ready Nigel, press the red button.’

‘I’ve always wanted to press the red button,’ he jokes.

‘Ready?’ says Kurt.

‘Ready,’ says Nigel.  ‘Oh, wait.  Can I have a penny to pay the Ferryman?’

‘Ferryman?’

‘Yes, to cross the river Styx.’

‘Of course!  Yes, here.  Look, I have some English coins.’

Nigel gratefully takes a coin and tucks it in a fold of his T-Shirt.’

‘Right.  Go for it,’ he says.

Without hesitation, smiling, he reaches up and presses the button.  We watch, in complete silence, as the contraption closes the syringe and pushes the barbiturate into Nigel’s body.

We have just moments left.

We surround him, holding onto him, completely unable to let go. 

I wrap my arms around his neck and gently kiss his cheek.

‘I love you,’ I whisper.

‘I love you too.’ 

I softly kiss his brow and, through my tears, look, for the final time, into his eyes.   There is no sadness there, no fear.   There is resolve, acceptance, and love.

‘Be happy Julie.’

I cling to him.  Craig, Ellie and Becky cling to him.

And then, far, far too soon, it’s time to let go.

One final kiss.

One last smile …

Then, a half laugh, a smile … ‘I’m feeling sleepy…’

… And, the man I have loved with all my heart, for forty-two wonderful years, is gone.