MND, Nigel and me. 11. Who Cares ...?

Nigel is shaved, showered, dressed, breakfasted and settled in the riser-recliner almost before he’s opened his eyes.   Barely awake, I mercilessly deprive him of his comfortable bed and barge through his morning routine like a buffalo on speed. 

‘What if we don’t like her?’ I rant, twitching expectantly at the curtains.  ‘What do we say?  “Sorry you’re not suitable … can’t think of a good reason, just don’t like your face…?”’

‘Let’s just meet her, eh?’ says Nigel, the embodiment of calm and reassuring reason.

‘Ok, ok.  But don’t say you like her if you don’t.  It doesn’t matter why:  boring; crazy; wart on her nose; two heads; weird walk.   Anything.  Cuppa?’

In the kitchen, the scarcely challenging task of tea and coffee preparation fails to free me from anxiety.

For God’s sake Julie, get a grip.   So long as her breath doesn’t stink like a drain, she is neither infuriatingly drop-dead gorgeous nor terrifyingly ugly – so long as she’s genuinely caring and good at the job, what does it matter? 

But it’s a big deal isn’t it?  Nigel’s first ever carer?  We’ve managed by ourselves for six years, but now we need a little help.  Not much – don’t want much – a mere three hours a week to start with.  Now that Nigel’s needs are such that he can’t be left alone for even a minute, those three hours will mean that I can revel in the thrill of a trip to the supermarket, or get pampered at the hairdressers – no - my hairdresser doesn’t pamper.  That’s why I like her.

Actually … maybe the carer should do the shopping and spare me from the supermarket?

‘You don’t realise how much care you actually need until you start with it,’ somebody from the Hospice said. 

Well, we will see.

For the hundredth time I check the training programme – the ghost of a college Quality Manager still lurks somewhere deep within me and, though some might consider it OTT, it seems perfectly natural to me to prepare a file with essential bullet points and colour-coded hand outs for reference.   At least I refrain from setting some kind of test.

Yes, it’s all there: medication chart with administration times and doses; Nigel’s likes and dislikes; the dos and don’ts in his routine; how many sugars in his tea; the spoon – not just any spoon - the particular spoon that must be used when feeding him his breakfast; indeed, what he eats for breakfast; the wealth of equipment – what it is, where it is, when it’s used, how it’s cleaned, how …

Come to think of it, I possibly have gone over the top …

The doorbell rings.  It’s her!

Of course there is no need to worry.  Within minutes Nigel has discovered that his first carer, Julie, is a fellow Bradfordian.  There follows a debate on which one of them can claim to have hailed from its roughest estate (I believe Nigel is the victor) then an update on the current ‘no-go’ areas and finally a crawl round the pubs and clubs of Nigel’s youth.

When Julie proposes that she gets on with the ‘caring,’ I meekly explain that, much like tidying up before the cleaner arrives, it is already done.    

‘But look!’ I enthuse, seeking the security of my comfort zone, ‘let me show you the file …’

Within weeks of Julie starting it becomes clear that it is impossible for me to stuff every possible ‘out-of–the-house’ activity into three short hours and the wise old owl from the Hospice is proved right. 

One carer becomes two, the hours increase from three, to six, to twelve, to forty - until we reach the point where Nigel has been living with MND for ten years.   

Now we have an established team of six carers, covering almost twenty-four hours a day. 

Apart from the afternoons.   The afternoons are ours.

Nigel’s disease progresses along a path featuring a series of plateaus and dips.  There is no telling how long it will rest on a particular plateau or how deep each dip will prove to be.  Invariably, Nigel emerges from the devastating depths beaten and bruised by the internal battering that rages within his already broken body. 

He is significantly weaker and increasingly disabled but, worse, somewhere deep in the bowels of the latest pit, his unconquerable spirit suffers a savage and vicious assault and some of its sparkle starts, so slowly it’s barely noticeable, to bleed, unchecked, from this new wound.      

The strain of trying to cope with each new plateau can be too much for both of us and our ragged emotions, intolerance, tetchiness and short tempers, trigger the cry for additional care. 

The fretful ‘will we like her/him’ scene is re-enacted every time a new carer joins the team. 

On their first day, whether young, worried and untested, or mature, vastly experienced and positively oozing confidence, or indeed, if the new carer just happens to be our daughter Ellie, Nigel greets each one of them with his customary charm and gallant, gregarious gusto, putting them instantly at ease by declaring:

‘Don’t laugh at my cock!’

Which, of course, ensures that that is exactly what they do.

In the early days, I am much more uncomfortable with the imposition wrought by the need for care than Nigel, and unreasonably reluctant to let go.  I feel needlessly concerned about Nigel’s loss of dignity, of others attending to his personal needs.

Am I simply fearful of having my nose pushed out?

Or am I afraid of losing him?

Suddenly there seems to me to be a gap between us that wasn’t there before.  I can hear someone else’s laughter coming from Nigel’s bathroom instead of mine.   I feel like a visitor in my own home.

Nigel embraces this latest intrusion into our lives with his usual tacit acceptance.   For him, life has become much more interesting.  He has new friends, stimulating new stories to listen to, different questions to ask and a fresh audience for his jokes.

Even though I know, and Nigel knows, that we not only need help, but also a break from one another, I’m apprehensive about taking a step back, of letting go.

When, at Nigel’s insistence I go on holiday with Paula and Tom – the first time I’ve ever been away without him – it is an immense relief to leave the grim spectre of death behind.   However, stemming perchance from my catholic roots, guilt jumps in the bag in its place.  The guilt lodges in my throat and sours the taste of food and wine; it burrows behind my eyes and smudges away the splendour from the sights and it expels the excited butterflies from my belly to nourish instead the nervous nausea.

But it passes. 

Anxiety wanes.

Our carers become our friends.   They are part of the family.  As such, they experience the ups and downs of our lives.

They cheerfully share with us abundant bouts of laughter and kindly offer comfort during times of sadness.   Occasionally they will agree to partake of a rather fine whiskey with Nigel and indulge in small glass of wine with me. 

We can trust them completely to keep it together, to manage Nigel’s care and well being, when members of our insane family decide to hold an impromptu disco, prancing and pirouetting around Nigel’s bed until four in the morning, in what he has dubbed his ‘West Wing’.    

The unlucky carer on the night shift attempts to keep the entire sorry lot of us safe and assists, without complaint, in the aftermath of such raves by happily sweeping up shards of shattered glass and scraping the odd drunken carcass off the kitchen floor.  

Their tact and discretion is undeniable.  Not one of them would dream of reminding any of us what idiots we made of ourselves the night before and they are all extraordinarily accomplished at becoming invisible when Nigel and I are having one of our little spats.

Their professionalism and skill ensures that the care for Nigel is both compassionate and dignified and, most of the time – a great deal of fun.   Laughter looms large in our house. 

There is no doubt that our carers have done much to enhance the quality of Nigel’s life and as for me, their influence on the retention of my sanity is substantial.

Whilst it is true that once I was the only one who could shower Nigel correctly, I am now the only who can’t.

I do, however, retain a certain title.  A title Nigel bestowed on me a long time ago. 

Despite many attempts by others to topple me from my podium, I remain the supreme and undisputed champion when the delicate arrangement of Nigel’s genitalia is required.

The worthy designation of ‘top bollock adjuster’ will be forever mine.

Nigel, MND and Me. 10: Magnificent deaths

You’re back. 

I’d almost forgotten.   How stupid of me.  How could I?   

From my huge, empty and solitary bed, I watch him sleep. 

His new bed and air mattress, a medical profiling bed that allows him to change position at the touch of a button, seems, at last, to be affording him some comfort.

But once again, despite the drugs, his night was long, agitated and disturbed.   

Much like a mother tending her sick child I let him rest.  

Perhaps a little longer will mean he doesn’t wake with another of those awful headaches.

The headaches are a recent development.   I’ve never known Nigel have a headache, even after eight pints the previous night.   Now, every morning is marred by nagging, inexplicable pain that lingers until lunch. 

You will spoil everything.

We’re settled now.  We have a routine.  Procedures are in place.   This plateau where Nigel’s disease has been parked for quite some time is familiar and manageable.

We are in control of this life of ours and know exactly what to do: medication first thing; give Nigel a shower; enjoy a leisurely breakfast before accepting the challenge of the Yorkshire Post’s quick and cryptic crosswords without resorting to the dictionary or Google.  

Craig calls for a cuppa, Les might pop in.  We could even get to see Ellie and Becky now they live just an hour away.  I clean an already clean house and generally make a drama out of sorting something.  I sort stuff.  Last week it was the garage, this week it’s the kitchen, next week it will be the bedrooms.  Nigel easily loses a few hours playing on-line poker and catching up with his Facebook friends.   

We’re fine.  Happy, even.

When the sun chooses to shine, and sometimes it does, we wander along the Esplanade, sit and look at the sea, revel in the warmth.   But mostly, we watch a bit of television and invariably enjoy a little snooze.

Now accustomed to the mundane, we no longer miss the madness.   Everything we need to get through our unhurried, humdrum day we have to hand.  Every piece of kit you could imagine from cups with straws, to ceiling hoists to wash-and-dry-your-bum toilet.  We have it all.

We’re doing okay.   Mogging on.

But now, you’re back.

Here you sit at the end of Nigel’s bed, a decaying phantom, spewing your scorn, slowly drumming time with those withered, skeletal fingers.

 Tap. Tap. Tap. 

Watching.  Waiting.

Must you smirk? 

Don’t touch him.  Don’t lay that putrid hand on his sleeping face.  You can’t have him.  Not yet.

We’re not ready for you. 

The unremarkable façade of St James’ (Jimmy’s) hospital in Leeds appears unexpectedly in the midst of a maze of small, equally unremarkable terraced houses.  Pulling into the car park I defer, grudgingly, to the sat nav.   It was right after all.  I had envisaged a somewhat grander approach and a more imposing exterior for such a famous institution. 

 Ah well, don’t judge a book and all that.

We arrive at the Respiratory Unit in good time, prepared for a wait.  The letter had said to allow three hours for the appointment.   

Oh no, I think, hearing the television in the waiting area before we see it.   As Nigel manoeuvres into position at the end of a row of seats, I take one of the mandatory green hospital chairs beside him and try not to look at the TV.   Not sure how long I can contend with the insufferable Jeremy Kyle, spouting with that pompous exasperation of the intrinsically virtuous, as he belittles those hapless, track-suit wearing, one brain cell apiece, cretins, who would willingly part with a kidney for five minutes of fame.

Yet another hospital, I think, ignoring the television as I mentally count the hours we have spent in such surroundings.  Pink and green as always - a splash of baby blue detracting not at all from the array of impractical, insipid colours.   Sighing, I think back to our previous hospital appointment in Sheffield – the completion of the trial.   The lithium had absolutely no impact on MND.   Sadly, Nigel never did make it to the end of the trial on his feet.   My God, that wheelchair took some pushing up those ramps in that car park!   There must have been a lift somewhere, just needed one iota of patience to look for it.

Thankfully, my random recollections are interrupted, and we are called away just as a preposterous rant about somebody’s boyfriend having eaten her mother’s dog gets underway.

‘Hiya, I’m Leanne,’ says a vivacious nurse with a blonde bob and a bright smile, her West Yorkshire accent evoking memories of my youth.  ‘Come wi’ me will yer?’

We follow, obediently, although we’re supposed to be seeing a Doctor Edwards.

‘I’m just gonna do some tests before you see the doctor,’ says Leanne, explaining before we even need to ask.

‘Where’re you from?’ asks Nigel, probably placing the accent within eight miles.  Surprisingly easy to do in fact – the distinction between the twang of nearby towns such as Halifax, Cleckheaton and Huddersfield are significant.

‘’alifax,’ she responds sunnily.’

‘My home town.’ I say heartily.

‘Thought so,’ says Nigel.  ‘You can guarantee a good night out in Halifax.   Always end up battling though.  Usually with the bouncers.  Especially in Clarence’s.’ 

‘Yeah?  That shut down yonks since,’ says Leanne.

‘I’m not surprised.  There was this particular night, me and our kid … ‘

Setting off on a personal stroll down memory lane, Nigel starts to chuckle.  We won’t get to hear the rest of the story.  Once he starts, he can’t stop. 

Leanne, now a big fan, attaches a small peg-like device on Nigel’s ear and then quickly hooks him up to an innocuous looking machine that demands no more of him than a couple of minutes of breathing in and out.   Given the antics going on inside his head, it takes more than ten.

Next he is required to blow with all his might into some other gadget – not an arduous task under normal circumstances, but next to impossible when consumed by laughter.

I am mightily tempted to slap him round the head, but I know from experience that this will only make him worse.

Eventually, her persistence rewarded, she has all she needs.

‘I wish they were all like you,’ she smiles, and sends us back to wait.  ‘I’ll get the results to the doctor.  He’ll not be long,’

I hope Mr Kyle has dealt with the dog drama and buggered off.  Ah, ‘Heir Hunters.’   Could be worse.

Before I become too concerned about Gladys Ethelberg’s fortune being consigned forever to the government’s coffers, the lovely Leanne reappears to take us to Doctor Edwards.   Happily, cousin Cyril is discovered just as we vacate the waiting area.

In comparison to Doctor Edwards, the animated Leanne appears lethargic. Exuberance positively bursts from him, spilling over every inch of his tiny office.   An ostensibly huge, but actually average built man, he dominates with the power of his personality.    Instantly likeable, with a booming voice, infectious smile and no-nonsense manner, he grasps Nigel’s hand and shakes it with enthusiastic vigour.  

In the time it takes for Nigel to negotiate the small space, we indulge in a little light chit-chat, bemoan the weather, berate the traffic, declare that we found the place all right, though not quite believing the sat nav, and decline the unusual offer of a cuppa.  

‘I must say you look exceptionally well!’ says Doctor Edwards, directing his bark towards Nigel.

 ‘I know I do.  I am.  Apart from MND.’

‘Of course,’ acknowledges the doctor, having no difficulty at all in understanding Nigel’s speech. 

‘Which is why you’re here,’ he goes on, barely pausing for breath. 

‘You’ve been suffering from headaches I understand?’ he says, peering at Nigel over the rimless specs that are perched on his nose.

‘Yes.’

‘Well, as I suspected they would be,’ he says, waving the papers that presumably hold the outcome of the tests, ‘the results are abnormal.’

‘Oh,’ says Nigel.

‘Yes.  You see, MND has started to affect your breathing muscles.   It’s very common.  Inevitable actually.  Your carbon dioxide levels are askew.’   

Matter of fact.  Business like. 

‘Hence the headaches.’

We’re both alarmed.  Perplexed.

‘I can understand why you seem surprised by this,’ went on Doctor Edwards, reading our faces,  ‘most people expect breathlessness to be the only sign of respiratory problems, but headaches are a classic symptom.’

I glance at Nigel.  His face is impassive.  The laughter, ceased.

Breathing.   That’s pretty vital.

‘But look at you!’ bellows the doctor, standing up from his chair and coming round to stand next to Nigel.  He pats him manfully on the shoulder, ‘you’re doing brilliantly,’ he continues reassuringly, ‘for someone with MND you’re unusually strong.  My God I wouldn’t bet on my chances in an arm wrestle with you!’

We laugh.  Like you do.

‘We can help with your breathing.   We’ll set you up with a non-invasive ventilator – affectionately known as a NIPPY - which I suggest you start using for a few hours overnight, increasing a little every week.’

He might just as well have been speaking Russian.  He sees the total incomprehension on my face. 

‘Don’t worry, we’ll make sure you have the training before you go and you can take it home with you today.’

The three-hour appointment now makes sense.

Doctor Edwards returns to his seat behind the desk, leans forward on his forearms and adopts, what I imagine, is, for him, an unusually serious expression.

‘Now, I do have to tell you that not everybody can get along with the NIPPY.  It does take a little getting used to but I do recommend you persevere.  If you use it, it will prolong life.  If you don’t, it won’t.  And your life will be shorter.’

I expect a pause, to allow this information to sink in, but suddenly, Nigel says,

‘How will I die?’

It’s now the doctor’s turn to look surprised.

 ‘I’m worried about choking,’ explains Nigel, helpfully.

Until this moment I had absolutely no idea that Nigel was concerned about the manner of his death.

Doctor Edwards leans back in his chair, spreads his arms wide as if to embrace and carry us, with the confidence of one who has all the answers, along the road to enlightenment. 

‘My fine fellow,’ he bellows.  ‘I have seen some magnificent deaths from MND.  Magnificent!  Not one MND sufferer that I know about has ever died from choking.   Let me put your mind at rest.  It won’t happen like that.’

‘How then?’ asks Nigel, uncommonly insistent.

‘Failure of the breathing muscles, generally.  However, many deaths result from a chest infection such as pneumonia, but let me assure you these deaths are exceptionally peaceful and controlled.  Because we know what to expect and when, we are rarely taken by surprise.  I have to tell you Mr Casson, in many ways, you are extremely lucky…’

I can’t help but raise my eyebrows a touch.

‘… For example,’ he bawls, ‘there will be some amongst your family and friends, perhaps more than one or two, who are worrying about you, who will quite probably die before you.  They have no idea it’s coming.  You, on the other hand, can prepare.  Make provision.   Say goodbye to your family.   This is denied so many.

Well, if you put it like that.

‘And, furthermore, you know that your death will be painless because we make sure of it.

‘You make sure of it?’

‘Absolutely.  When the time comes, we will make you comfortable.’

Nigel seems reassured.  ‘Thank you,’ he says, smiling now, ‘you have made me feel a lot better.

‘You’re welcome,’ he beams,  ‘now, off you go and get your NIPPY.  And don’t forget, persevere!  It’s your friend!’

Our new friend sits on the table next to Nigel’s bed occupying the space where the wardrobes once stood.  The tubes are attached, the ‘breath in’, ‘pause’, ‘breath out’ settings all determined and fixed by our trainer at ‘Jimmy’s’ to alleviate Nigel’s current problems.   All I have to do is put the headpiece over Nigel’s head, make sure the nose pillow – cute name – is the right way up and sitting properly on his face, and turn the machine on.   No, turn the machine on first, and then put the headpiece on.   Might be worth checking the instruction manual again. 

Later that night I hoist Nigel carefully into bed.  He’s exhausted.  We both are.  It’s been quite a day.

Once lowered comfortably onto the mattress I fold the duvet around him, plump up his pillow and lift the sides of the bed.  Everything is in place and within his reach:  iPad clamped securely on the side to enable Nigel to entertain his Facebook friends; water in case he’s thirsty; extra tablets should he need them; sweets should he fancy a treat; tissues to capture the odd sneeze and the alarm, should the impossible occur and I don’t actually hear him call.  Just the NIPPY left.

I turn it on and move to fit the headpiece over his face.  Nigel reaches up and takes hold of my hand, stopping me from going any further.

He smiles, but the smile fails to flush the sadness from his tired eyes.

 ‘I started to die today,’ he says.

‘I know,’ I whisper.   

I place a soft and gentle kiss on his forehead.  And, as I do …

… the thing at the end of bed slowly grins.

Tap.  Tap.  Tap.