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The Long Way Round

June 13, 2021

I’m in Eastern Europe.

This is what Lord Byron said about where I am, ‘At the birth of our planet, the most beautiful encounter between the land and the sea must have happened at the coast of Montenegro. When the pearls of nature were sown, handfuls of them were cast on this soil.’

This is where mountains soar and then dive into icy waters that are inky for their depth.

When I swim, now, here, mid June, before the summer has begun to take winter’s brittle edge off, I must swim fast, grazing the surface as lightly as I can. I picture a lily trotter and laugh. If my limbs dip too low, they are pinched by cold. But the glow that warms my body when I step to the shore to wrap myself in a sun-warmed towel is addictive; I go back for more.

I’m on my way to spend time with mum. But I must dance through Covid hoops, skirting hotel imposed quarantine, wearing my mask and brandishing my Negative-for-Corona certificate as I go: Kilimanjaro, Dar es Salaam, Istanbul, Podgorica … some airports are eerily empty and planes full of space.

I feel a long way from my own mountains, here. And so close to these. I watch an evening stripe of sun slide up sheer sides even as it sinks low over some unseen western horizons. And then I watch city lights sputter to life and gleam across black waters towards me.

I catch my breath and collect my thoughts. If I line them up, neatly, rank and file, will it make the future seem less uncertain, will it tidy my head in readiness for the making of decisions. About mum. Will it?

Hooray for Siblings

June 3, 2021

Mum has been low these last few days.

An awareness I think of both her body and her brain letting her down. 

She proclaims with such indignation, ‘well I wish somebody had bothered to tell me’ that you briefly question whether you ever actually did: tell her whatever it was she has apparently never been told. 

The slow slide of dementia’s distrustful hand is in evidence everywhere: ‘I think you are lying/I think he is cross with me/nobody bothered to tell me.’

But the paranoia that is attendant to forgetting is forgivable isn’t it: when your mind is a quagmire and all the facts are bogged down and stuck.  Muddied by a mind scribbled all over by plaques and tangles and proteins gone awry.

My siblings and I are a tight and united little force and I give thanks for that always. For their patience with my flapping and bossing and distress. For my brother’s astonishing and unstinting stamina and kindness even when Mum’s messy mind has him and his good intentions all wrong.   Because they both make me laugh – that dark humour that can only be shared by those in similarly tragicomic circumstances. 

Woe betide my husband if he makes light of my mum’s illness.

But when my brother says mum is tired after doing the ‘filing’ that morning (and she means the loading of  the dishwasher), we share a quiet smile.

And my sister and I laugh out loud when we compare the reasons mum did not get out of bed that day.

To me she says, ‘I am perfectly well. I am just very tired. I am having a day off. I think I have been working (filing?) too hard’.

To my sister she says, ‘Rob told me I had to stay in bed all day!’

As mum’s communication with us becomes ever more frayed, so mine and my siblings seems tighter and neater as we pick up the threads of one another’s thoughts.

And that’s lucky.

Know my Name

May 25, 2021

The first thing mum says to me when she picks up my call today is, ‘I have been having an argument with Sam, I hope you will be able to clear things up for me’.

Sam is my twenty something nephew. He lives with my brother – and so, by extension, with mum, his grandmother.   The argument erupted over lunch which mum has just had.  I can hear residual kitchen conversation in the background.

Sure mum, I say. I imagine the disagreement will have been about coronavirus or perhaps something topical, something about geography or religion or even politics.  All things mum once took an energetic interest in. The things she’d still like to take an interest in if only she could remember the names of all the players, of all the places.

‘Sam says I have a daughter called Anthea. I don’t.’

For a second, a single second, I think my heart stops, and then I say, ‘You do, mum: that’s me; I’m Anthea’ and then, ‘to make myself feel better, to take the sting out of all this, to make Mum laugh, I say, ‘I’m your favourite child, remember.’

Mum would have laughed once.  Not that long ago she laughed loud at exactly those words:

‘I’m your favourite child!’

I dont have favourites, she said that day, ‘I love you all the same’.

Now she just says, ‘oh’ in a very small voice. And I dont know if the ‘oh’ is because Sam was right. 

Or because she has a daughter called Anthea.

I dont feel the sadness until later. Somehow the shock dulls the soreness; like a slap on the cheek, you don’t feel the burn for a bit. There is a brief spell of nothing. You are numb.  I dont’ feel it until I confess the incident to my sister. I tell her in a voice note. In a tone of humour and levity. She is not fooled, ‘my heart breaks for you’, she says and I can hear tears on her words.   

Why does it feel like a confession – this owning up to mum not remembering me?  Like something I am ashamed of. That my mother has forgotten she has a daughter by my name. This is not personal. I know this. I tell myself this often. But have I failed her in some way that she is erasing me first?

I do what I have done before. I tell my children:  Remember this. If I ever ever, ever forget you, know I have loved my children more than anything in the world. I do it via the internet; if I tack those words safely to the ether, I reason, they will always be able to find them, even if I cannot find myself.

My youngest messages back: And so has Gran.

And it is only then that I cry.

How to Make Soup

May 22, 2021

My sister says, on the phone, ‘sometimes when I talk to mum, it’s hard – you know – to keep the conversation moving forward’.

I know what she means. And I’m relieved it’s not just me who feels this.  I am especially relieved because it is me who mum forgot, not my sister.  

When I talk to mum, blindly, on Skype, our conversations don’t just feel disconnected because of distance and the disconcerting fracture that comes as the internet swoops in and out. Our conversations feel disconnected because mum is.

‘Do you think she could pick us out of a lineup?’ I ask my sister.  My sister isn’t sure. But she reveals a clever trick she employed during a recent call.

‘I propped my phone up on my kitchen counter and made soup as I talked to mum last night, that way I could talk her through the recipe and hold ingredients up to the lens for her to see’.

Sweet potato, butternut and turmeric, she tells me.

‘And then I held the camera to the pan so mum could see it all bubbling.’

I imagine mum’s face as she watched my little sister’s soup, breathy and hot in the pot. I imagine her smiling.  I imagine she might have said she has never eaten a sweet potato before. Like she has said of other very ordinary foods. 

‘Gosh, this is delicious! What is it?’

‘Yogurt, ma.’

‘Well, it’s lovely; I don’t think I’ve ever had it before … have I?’

‘Possibly, mum’.

Mum’s memory is shot, but her interest remains intact. She is always a delighted and engaged listener, even if the stories we tell her slip through almost as soon as we’ve related them, like fine grained rice through the too big holes of a colander.

My sister’s soup-making-on-the-screen wouldn’t work for me though.

I don’t turn my camera on, remember.

Because I am certain my mum couldn’t pick me out of a line up.

Kind Light

May 20, 2021

The last leg of my walk yesterday and suddenly the sun, caught in the crack afforded by a break in a blanket of cloud and my western horizons, flooded my world.

As if whiskey light were being poured over me; the earth was tiger striped orange and black, and I imagined the sun hanging onto the last of the daylight for dear life: these last long fingers of brightness. I stopped still and drank in that golden hour. It was brief and beautiful.

It made me think of mum. She used to call this the Kind End of the Day. I was never sure if that was because of the light, or the sudden cool that descends on Africa, in that short hiatus between too hot, too bright afternoon and the cool gloom of dusk. I think perhaps both.  All of Africa’s sharp edges are knocked off then: it’s still just bright enough to notice her beautiful bits, but dwindling light has softened corners. We are all prettier in the absence of harsh light; younger and less tired. 

We would often sit on a verandah together then, share a beer and watch the light go, quietly, elegantly, aflame. Until suddenly it was gone and the bats and frogs and bushbabies had begun to sing and chirp and argue and shout.

‘Fancy another?’ I’d say lifting the empty bottle and Mum would smile, ‘Oh yes.’

Mum talks about the weather often when I call. But the conversations are muddled. My seasons are opposite to hers but she cannot grasp this fact: ‘Where are you again?’

She tells me about the weather forecast as if we share one, as if her rain will be mine, my sunshine brighten her day. As if I might even have had snow. Sometimes as she speaks she gazes quizzically out of a window. I watch her on my screen. Her head is tilted. I see the soft underneath of her chin, notice her hair is ever longer, even whiter.

‘It’s a funny old day today’, she says, ‘the sky is covered in cloud. And yet I can still see the sun. I wonder where it’s coming from’, and she laughs. 

It’s called optimism. That sunshine she sees. The same sunshine that rolled behind rocks, went underground, when she was sick with Depression.

I am astonished – grateful – it’s rolled back out again, that I can see this crack of it now before it vanishes behind scudding clouds that I know gather and bank.

I can see their blackness out of the corner of my eye.

The Shapeless Unease

May 19, 2021

I hate the plodding of time when I can’t sleep.

Like now.

Weeks of it. Of insomnia. Plucking at me. Pinching.

Just as I slide towards sweet oblivion, there it is. And I am tugged wide awake again and fretful and furious.

I lie into the small hours and read Samantha Harvey’s Shapeless Unease and I think hers is a perfect descriptor of this malady: Shapeless Unease: this unmoulding of me, in the dark. Where no form is distinct and where I feel, at my worst, as if I’m coming undone.

Sleeplessness is unravelling my sleave of care.

It makes for rows. My husband cannot understand that I do not sleep. Cannot empathise with my midnight wandering, the musical beds I play, dragging pillow, water, phone (for the sound not the screen: NO BLUE LIGHT!) as I trail miserably about the house hearing only the soft, enviable snores of others – him, the dog. I want to be able to sleep like the cat: anytime, anyplace, anywhere. The Martini ads of champion nappers; I feel his hot heft upon me. I listen to the rumble of his purr. It does not help.

I have done what the doctor said. No coffee. A light supper. Exercise (5 hard miles a day, up and down hills).  And no, definitely no screens. 

I push my earphones  deep into my ear and try to blindly scroll for a podcast to help me drop off. But my needing-to-sleep-self is fussy about its listening: no music, no high voices, no commercials. I need a low monotone. A lecture on physics would be good. One that runs for hours. 

Still nothing. 

I scroll some more, trying not to look at the screen, hunting the white noise app I downloaded. I listen to Rain on a Tent.

I give up. Reach for the light. Pick up Harvey, speed read as I flick through pages too fast. Looking for a solution. A cure. She has none. Time. 

In time this will burn out. 

If I don’t first.

I am trying to understand why. Why does sleep elude me.

Am I worried?

I am not sick. Or in pain.

Are there anxieties that broil below the surface of day that I can feel but not see, do I only feel their presence in the still silence of dark?

Is that the Shapeless Unease?

Blue for Devils

May 10, 2021

When I speak to mum today she is confused.  A medical complaint which has been addressed is causing her concern.  She does not remember the names of the relevant bits of her anatomy. She does not understand why the doctor has done what he has done, prescribed what he has prescribed. She does not remember there was ever a complaint. 

‘I had no problem until now.’

But she did. For months. 

I touch only lightly on that; nobody wants to be made to feel they are so forgetful they forgot why they went to the doctor.

Instead I labour next steps.

‘If this doesn’t help, mum, they’ll do that’, I try to reassure.

And, I continue, if that doesn’t work, there’s surgery, ‘but that’s a last resort, ma, nobody wants an operation if they can avoid it.’

No, she agrees, and then, indignantly, sounding hurt: ‘Thank you very much for explaining all that to me, that’s very helpful. Nobody has bothered to explain any of that before. Nobody is listening to me’.

Oh but we are, mum.

We have explained. And we are listening.

But you don’t hear. Because you can’t remember.

And all I can think today is that Dementia is a bitch.

*******************************

Last night I watched What They Had on Netflix.

I sometimes think I can learn something from these sorts of things: book and films that depict other people’s experience of all this. 

Blythe Danner’s interpretation of a woman succumbing to what mum is succumbing to made me weep. The same sweetly, softly, fraying falling apart. 

So I learned Dementia is a bitch for everybody.

*******************************

When I walk this evening the sky comes out in sympathy with my mood. Sinking and stormy.

And I wonder then: why is gloom called Blue. 

Because, I discover later, it is named for the 17th-century expression ‘blue devils’ after the hallucinations that come with severe alcohol withdrawal.  With time the reference was blurred, the devils disappeared and in their stead Blues morphed as depression.

Demens, for dementia, and devils for depression.

All I hear is demons.

A Lesson in Hope

May 7, 2021

Three days ago, I earned a writing commission on a paper I write for sometimes.


There is always elation in writing gigs. The money is rubbish. But the occupation is crucial.


Minding gaps, stuffing them chock full of words.


I took my commission into the ether, dragging it behind me, and filled it full of questions which I posed fast and furious to all the right people to gather the fat to hitch to the skeleton of my story.  So that it stood up under scrutiny when the fact checkers took it to task.


The next day the editor killed my story. It was too similar to one the paper was already running.


One was hopeful, one was not.  


It happens this – this pitching into a void or pitching and editors pinching your ideas and handing them to staffers or this pitching that comes to nothing. It happens alot. That was not the lesson.


The lesson was much better than that. 


Mum’s story comes as two halves now: a bad day, when her head is all tangled and knotted and she talks nonsense. And then one that is starling and bright and full of great conversation, a day that brings me hope.

 
Like the story I was going to write: a hopeful story about a hopeless situation.


Because otherwise how do you keep going?

W is for Walking

April 30, 2021

I listen as I pound. To podcasts.  The only time I suspend the chat is when I need to talk to myself: my phone is crowded with voice notes. Aide-mémoires. Ideas. I’ll transcribe them as soon as I get home. If I don’t, they lose context and are gone. Like the ideas you wake to at 2am and know they’re so good you can’t possibly forget them by morning. But you have: they’ve been sifted out by deeper sleep. 

I walk fast so that my dictation is punctuated by silences as I catch my breath. I live high up. On the edge of a mountain. So that the earth seems to spill away from me. In the evenings I walk until the sun settles itself into the saddle of a valley strung way out west.

Sometimes I imagine I’m at the top of the world. Sometimes my walks make me feel as if I am: recently I began to walk at dawn, nudging endorphins to the fore. I don’t know if it’s that which sets my spirits soaring or the tea afterwards? 

My dog Jip accompanies me. She wakes me to walk early and in the evening gets under my feet to remind me it’s time to get out again. Pavlovian dog. There used to be two of her. It took me ages to stop whistling up both dogs: ’Come on girls, time for a walk’; ages to remember I had only one. The first time it happened, not long after Pili was poisoned (‘nothng we could do,’ said the vet sadly) I cried so hard I couldn’t see where I was going. 

And Jip kept looking behind us as if to say, ‘Aren’t we missing somebody?’

We were. We still are.

Remembering the New Dress

April 26, 2021

Mum describes a rare outing in the car – for a doctor’s appointment in the city.

‘Was it Limerick you went to, Ma?’ I ask.

No, she says, ‘no, it wasn’t Limerick.’

It was. So I persevere. I never know whether I should – but if I don’t, if I don’t sometimes gently nudge to correct the slipping, the stories I want to tell to keep her tethered will have no basis.

‘Did you go over a bridge – cross a big river?’

‘Oh yes!’ She says.

That’s Limerick, I tell her.

Oh. She says. A small oh.

I swiftly pick up the conversation, to stop that sorrowful little gap, ‘I’ve been there with you, Ma, a long time ago.’

‘Have you?’

And there it is: my cue to narrate something of her broken past, my chance to remind her she was once whole and autonomous. An opportunity to remedy, briefly, some small part of this loss.

‘You took me there to buy a dress for Amelia’s graduation.’

‘Did I?’  And she sounds astounded – astounded that once there was the agency, the ability – to find her way to, around, a city.  And she sounds delighted, delighted that she could once do something for somebody. She could once drive me to the city my brother drove her to today.

I describe finding a dress after much searching, I describe taking it back to hers, trying it on again and realising that it was too big, it hung from my shoulders and dipped around my neck.

Disappointed, I took it back, with mum.  And whilst in the store, I nipped downstairs, to the sales racks, and there was the same dress, a size smaller and at a fraction of the original price.

Mum laughs at my story, now: ‘Oh how wonderful: that you found the right dress for less money!’ She can feel the small thrill of successful retail therapy again. I describe the lunch we ate in a cafe on the river, I tell her about the shoes we found to go with my new dress afterwards.

Mum says, ‘So much of my memory has gone, so much. I seem only to remember the sad bits.’

And I wonder what she means – sad bits: dad’s death? Her long battle with depression?

I tell her, ‘Mum, there were tons of good bits, tons, we’ll keep them safe for you, I’ll remind you.’

And she smiles, I watch her on my small screen, ‘thank you’, she says, ‘thank you, that would be good.’