Showing posts with label care. Show all posts
Showing posts with label care. Show all posts

Sunday, March 30, 2014

On Mother's Day: I am Feeling

I’ve finally watched I Am Breathing, a feature documentary directed by Emma Davie and Morag McKinnon, and it inspired me to write the Blog entry below. 
The film documents the last year or so of the life of Neil Platt, a sufferer of Motor Neurone Disease, which also claimed Rose Finn-Kelcey recently, an artist and inspiring former tutor of mine.
The film has been on my radar for ages, initially via our mutual connection with the wonderful Scottish Documentary Institute and then latterly because it’s simply been a huge and deserved success story of a film.

So why did it take me so long to watch it?
In a nutshell – because when you have just lived and filmed an end-of-life story of your own (The Closer We Get) it doesn’t exactly make you hungry for others. Even if you know they will be as life affirming, charming, profound and damned important as I Am Breathing is, you find your appetite veering off to some decidedly escapist film fare instead.

But, of course, the grief of bereavement will get you in the end whatever you are watching. A few months ago I went to see the blockbuster Gravity in 3D, in a small local cinema. I had popcorn and Coke in hand, I was expecting to have fun. From almost the first instant, I was shocked to find myself weeping behind my 3D glasses. It doesn’t take a psychotherapist to work out why – a woman, alone, in a dark abyss, trying to fix something she knows probably can’t be fixed.
So to endure I Am Breathing was hard for me. I managed to stay dry-eyed until about half way through - not too shabby. Amongst the people around Neil is his mother, an unimaginably brave woman who has survived the death of her husband and now of her son from the same dreadful disease, as well as Neil’s wife and small son.

So, it seems timely to publish this text about my mum Ann on Mother’s Day, and to dedicate it to the two mothers Neil Platt left behind.

Ann & Karen playing Beauty Parlours

I am Feeling
Exhausted from digging a large plot in the vegetable garden in early Spring, I lie down, utterly flat on the still compacted ground nearby. How seldom I do this now, when as a teenager I think it was a near-daily occurrence, even in the damp West Coast of Scotland. (If further evidence is sought, see final scene of Gregory’s Girl, filmed up the road from my hometown and featuring kids very like we were).

For a spell I gaze upwards into the clouds and the bluest of skies, listlessly tracking the odd bird overhead and feeling the good, cold, dense clods support my body’s form. My breathing slowing, my heaviness reminds me of the body my mother inhabited for those last 5 years, inert bar for her head and neck, and an ever-deteriorating right arm. I remember in the mornings the carers manoeuvring it onto its edges, first one then the other, as solid as clay, a deadweight which must be cleansed and dressed. As the women worked across and along her limbs, my mother’s face held the expression of one who is wondering about a barely perceptible distant sound – the vestigial nerves in her flesh were relaying confused yet tangible sensations she could not quite place. If something was uncomfortable to her, and it often was, she struggled to describe to us how, choosing peculiar words like ‘tight’ and ‘soft’ in an attempt to convey what this new relationship with her body felt like.

The sky above me suddenly darkened and sleet began to fall on my face. It felt wonderful. In such moments when the natural world seems at its most electrifyingly complete and beautiful and part of me and of all of us, I always think of my mother and I usually cry. In a photograph of her as a teenager walking on a beach with a dog, it’s evidently cold, windy weather as she wears a big jumper and a headscarf. But her legs and feet are bare and her face beams with the sensual joy and fun of cold sand and spray. Until her stroke she retained this appetite for earthy pleasures - eating crusty bread, cycling into the wind along the seafront, stroking a supine, sun-warmed cat.

So as I blink in the tumbling sleet, my tears find their path of least resistance from the outer corners of my eyes, down my temples and into my hair, their dampness instantly provoking shivering. I don’t wipe them. Mum very seldom wept after her stroke, it was a very grave sign if she did, but when it happened she could not wipe them, could not lift her hand, and so if I was there I would oblige. But what of the times – there must have been some –when I was not there?

After the stroke, Mum’s short spell in physiotherapy ended with a tacit acceptance that this once sprightly woman, the kind of woman that rarely sat down for long, would be wheelchair bound for the rest of her life. Her damaged eyesight meant a self-drive chair would be impossible. Along with the myriad other dependencies (personal care, feeding, medication, dressing) she was also, suddenly and forever, unable to autonomously decide where she would be and when. After a few months of our caring routine kicking in, I began noticing how listless Mum could become with the clockwork carers visits, the porridge and lukewarm tea, the endless daytime television in the over warm lounge. Her bright blue eyes literally clouded over for days at a time.

What brought back her sparkle was always something unexpected and invariably something sensory, so I became adept at inventing and stage-managing as many of these as I could fit in to her waking hours, and sometimes also into the hours where she was meant to be sleeping but often wasn’t: Whether it was sharing a fruity face-pack or a blast of loud music with our terrible vocal accompaniment, feeding her a very ripe mango or a very salty chip, manoeuvring a furry cuddle from the longsuffering cat Jack, a cold skoosh of Rive Gauche on her neck, an illicit chocolate eaten in bed or a noseful of fragrant sweet peas.

Occasionally these energising episodes also happened without so much pre-planning by me: Shortly after Mum had been returned home from the hospital, we decided to pay a visit an old friend of hers, now residing in a large old peoples home along the coast road. At this stage I’d not yet got used to the fandango of getting Mum into her coat, hat and gloves whilst she was already seated in her wheelchair. But she was patient and after about twenty minutes manipulating awkward limbs and digits and with me in a light sweat by now, I had swaddled her from head to toe and we careered our way out of the house and the close and onto the deserted street. I should have recognised what the peculiar soundlessness and pallor of the day foretold, but keen to reach the beachside ‘Prom’ which had been a daily landmark of her entire adult life I pushed the chair onwards at speed, Mum occasionally complaining good-naturedly over the potholes encountered en route.

Doris, our hostess, was a big, robust woman some ten years older than Mum and suffering from dementia. In her small, neat room, I loosened Mum’s layers and listened in to their conversation, smiling benignly. Doris was convinced that Mum and her had been Wrens in the War together, and no matter how often Mum reminded her of their actual relationship – Mum had been an occasional cleaner and housekeeper for Doris – Doris’ mind would wander off to those wartime escapades she was certain they’d shared. Occasionally Doris would turn to me and speak as if Mum wasn’t there – “She was a gifted telephone operator, you know’. I could not help reflecting on the odd couple they seemed – each with infirmities at such odds with what remained. 
What if Mum had that fit and strong body of Doris’, and Doris could adopt the alert and perceptive mind Mum still had?

We left Doris in time to speed back along the Prom in time for the carers’ mid afternoon home visit, and almost as soon as we were parallel to the pewter gray sea the sky whitened dramatically. A blizzard began and within minutes enveloped us to a dramatic degree – we could barely see 5 metres ahead. By now I was almost running behind the wheelchair, terrified that Mum would be scared and confused, or at the very least rather cross with me for getting us into this mess. Bellowing over the chair handles, I assured her we’d be home in no time, who on earth would have guessed this snow was on its way, etc etc. Snow clung to our every surface, it wasn’t so much falling as propelling itself horizontally onto us. Every hundred metres or so I stopped the chair, dashed round to the front and readjusted Mum’s hat, scarf and collar so that barely her nose and eyes were open to the elements. With every pit stop she was giggling more, until be the end of the journey we were both howling with laughter.


When we finally reached home the carers were already indoors, more than mildly concerned as to our whereabouts given the extreme weather. They gently scolded me for being caught out in that with Mum, but as they removed her layers and the fast melting snowflakes we caught each other’s eye and shared a deeply conspiratorial smile.

Tuesday, January 14, 2014

The Closer We Get - life becomes film

















If you follow me elsewhere you may have noticed my new feature doc The Closer We Get (a hard-won title!) now fundraising on Indiegogo here until end of Sat. Jan 18th.

Much of this film was inspired by writing here in this modest Blog, and getting the occasional lovely message of support from this audience - here has always felt like a good place, where I wasn't writing for work, or because I was obliged to. I always wrote here because I wanted to, and the result is a sort of diary of my last few years, of much sorrow but of some joy too.

And this is what has become The Closer We Get. So I thank you Blogger :-)

I'm biased of course, but I think it's an important film that I encourage you to support, especially if like me you have found yourself suddenly in a family 'car crash', reconfiguring your life and beliefs after something earth shatteringly dreadful has happened.

For everyone who has survived that, and for everyone who will have to in the future, this is a film that must be made. So please - come and be part of that with me.

Tuesday, May 18, 2010

“I'm supposed to be indestructible”

My father’s words down the phone-line, as he recuperates after a mini-stroke he has suffered at work in London. Mum – in hospital again herself for stroke-related bowel problems – speaks to him encouragingly via my mobile phone. She tries to gee him up, they share an innate and now rather comic stoicism despite being ex husband and wife - albeit the friendliest you could hope for.
Earlier on that day I made use of mum’s hospital stay by having a big and overdue clear out of her kitchen cupboard, a space that had become chaotic without her fastidious and regular attention. As my brother had pointed out a few months ago, this Mary-Poppins-bag of a place still contained the water bowl and collar of our family dog – dead for some twenty years; a rug beater in a house with no rugs; tennis equipment for a garden with no lawn and inexplicable oddities such as a single shelf bracket and meticulously-dated empty lightbulb boxes. Mum was no hoarder – even as a child I was unsettled by her unsentimental attitude to possessions that had passed their sell-by date – so this space was a surprisingly intimate view of the important minutieae of her life before she became ill.
I had to re-assess many useful things within, now with the acceptance that the bicycle clips would not be needed again, that she would never be able to water a houseplant now, nor mend a fuse. I even found the bag she must have used on the very day of her devastating stroke – complete with an array of cloths for her cleaning job, a tiny notebook recording hours worked, and a foil of nicotine-replacement gum.

As I sorted and re-catagorized the last of the neatly packed and labelled objects I found a frail narrative of her feelings on making the move to this house, after seperating from dad and living alone for the first time in her life: a personal alarm, a front-door spyhole and a number of large locks – all still boxed, unused.

Friday, February 12, 2010

A Kind of Normal

Mum's stable. That's what I tell kindly, enquiring people who - like me, before - have usually heard only the good stories about stroke victims. The "After a few weeks he was up and about" and "When she's tired she walks with a slight limp" stories. After nearly a year visiting mum in the stroke unit, you almost get used to seeing the many younger and sicker stroke victims and their families. But outside, once these sufferers are back in their own homes, they are - of course - as invisible as they were before their strokes. This is one of the challenges for charities trying to raise awareness of this mysterious curse of a disease - the worse sufferers are behind closed doors, not in marathons or in celebrity magazines.

There are times when I wonder if my 'real' mother is simply on a long, long holiday. She'll be back soon, I hope. The lively wee chatterbox, always on her bicycle, nipping to the shops, has left behind this little, bloated and sleepy old person in her place - just to make us appreciate her more when she gets back home to us.
And then, at night as I stand by her bedside once the bustling carers have gone, she will fix me with the piercing gaze she has somehow developed since the stroke and we will speak about something intimate, something she has remembered from our past. Sometimes these conversations are deeper than anything we managed to find time for before. Now we are free from the workaday rituals of mother / daughter relations - sharing shopping, cooking, worrying - we have an odd, luxurious amount of time.

Sometimes I bring her a bit of chocolate in bed. The rules of our childhood have been unilaterally abolished by the stroke: There are no rules now - we can have sweets after bedtime, a CD on while she waits for the night carers; she's allowed to refuse to brush her teeth, yawn without covering her mouth and let the cat onto her bed.