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.