My Mother the Accidental Tyrant

There is this hideous anomaly. With dementia. At their most vulnerable, sufferers, when they need you the most – when they cannot get up and down steps alone or walk safely unaided because their shuffling gait predisposes them to trips and falls, when they are incontinent, cannot use a phone or a tv remote or a shower without help for fear of scalding. When they would not eat if you did not prepare their meals for them, put food in front of them. When you do all these things because they are your mother or your father and this is your duty. Then, because their allegiance to you, their connection or relationship or kinship or even affection towards you, is fading or forgotten – or has diminished to the point of non existence – they can be bloody.

They can be really shitty.

Today is one of those days.

Today my mother told me, accusingly, when I put my head around her door to check she was awake and had tea, “there was no hot water for me, so I only have half a cold cup’. She said it imperiously and with a voice that dripped accusation: This was obviously my fault.

I leave a full flask of hot water ready for mum’s morning tea in her room each night. I am trying to extend what little autonomy there is left – she can make a mug of tea but she cannot be trusted with an electric kettle.

‘You must have finished all the water during the night, mum”, I say – even though I urge her, every night, when I put her to bed, motioning the clock beside it, ‘Don’t get up until the big hand is on the 12 and little one on the six’.

Sundowning: Alzheimer’s disease causes circadian rhythms to trip and short circuit and spark when they shouldn’t. It explains mum’s nocturnal roaming and her confused body temperature so that on waking she is freezing. Icebox cold despite blankets which would drown me in a puddle of perspiration.

Ok, she might say, smiling, obedient. And then forgets and is up at midnight, 2am, Again at 4.  Drinking tea, cup after cup.

Finishing the water in the flask.

“I did NOT finish the water. There was none.”

I don’t mean to raise my voice but I do, I don’t shout, but I elevate the pitch, insistent, ‘Mum, I promise there was water there’.

Don’t shout at me, she wails and instantly I feel mortified and mean.

I refill the flask with freshly boiled water, I make her tea, she greedily accepts a mug, demands to know whether I’ve sugared it with two spoons and grins triumphantly when I confirm I have. I tell I will be back in an hour to help her dress for breakfast. I depart to my study to try to work.

An hour later, I return. She is buried beneath bed covers.

Mum, I shake her gently, ‘you need to get up for breakfast’.

She comes to: scowling, complaining: “I feel sick. I feel tired. I feel faint.”

I tell her I’m not surprised: she hasn’t eaten for hours and and it’s time for breakfast and anyway I add, “you probably have indigestion after all that tea”.

She make a face at me and growls.

I bribe her up to sit in front of her TV (this morning her rising will happen by infinitesimal, painful, selfishly time-consuming, degrees). I count to ten and slow my breathing. I do that a lot now.

“I will bring you a marmalade sandwich”, I say. 

The day plods on. Her mostly sleeping in a chair, surfacing only at noon, demanding, ‘When is it lunchtime, where is my lunch?”

She will not walk with me later. 

I feel sick, I feel tired, I feel faint.

Sometimes she says, ‘My head feels all mad’

I often attempt levity. 

“Let’s walk, if we walk fast and get your heart pumping, we’ll get blood up to your brain. Let’s let the wind blow the cobwebs away, you will feel better’.

Sometimes she concedes and as we walk, her hand clutching the crook of my elbow, her mood falls away. So that on good days, we walk further than she meant to. Not today. Today she rounds her shoulders so her curled-over spine is more curled, something folding into itself, away from the world and from me.

‘I don’t want to walk’

I give up. Give in. I lead her to her room. I pour her a Coke.  

Coke Cola adds life.

‘It will give you a lift’, I say; today is shower day (we need all the lift/life we can get).

Oh no, not a shower, she moans.

Yes, I say resolutely. And I put the television on.

Attenborough. Ordinarily she loves wildlife, there is movement and colour and stirring music and marvellous magical nature and she doesn’t have to keep a track of key players or struggle to follow a story line.

‘Here, something nice about animals’.

She grimaces, ‘I’d rather people’.

Oh. Ok.

I put on a documentary about the royal family, another tried and tested and almost always a success, a series she never tires of because she cannot remember she watched it yesterday and the day before that and they day before that.

I return ten minutes later.

How’s this, I ask, ‘Are you enjoying this?’

Well it’s alright she says and wrinkles her nose

Ma, if you’re not enjoying it, I say, I can change it.

“Well they are rather horrid Germans”, she says and I feel amused – bemused by – and ashamed of – her all at the same time.

I pick up the remote control with an even, calm gesture, the tiniest sigh, trying not to look as cross. I navigate to Anne with an E. Mum watches it on a loop, she watches it almost every day, she never remembers what has happened but she describes it as ‘cheerful’,

Then I whistle up Jip and I walk. I walk hard and fast and furiously for an hour. I walk so fast that the anger and the frustration and the sadness can’t keep up with me.

Somebody asked me not long ago, ‘don’t you resent her? Your mother? You have had to look after her your whole life?’

No. No, I don’t resent her. 

But I have had to consider why days like this are so hard. So horrid. Why do I instantly spin frustrated, impatient. And I know why.

They remind me of Depression. This is precisely the way she behaved when she was depressed. She would vacillate between miserable and tearful and angry complaints of I feel sick/I feel tired/I feel faint. She didn’t feel any of these things. She felt nothing so she made excuses to do nothing. No offer was good enough, no attempt at humour or kindness or patience or the suggestion of a walk was accepted with a smile or grace or even the slenderest effort to try. She could be unkind. Self-centred. 

When she behaves like this now, something about it feels like picking at a scab.  Pressing a bruise I sometimes forget I have.

When I get home an hour later, the Coke is drunk, she is calm.

‘Shower?’

Yes, I’ll get ready.

I go through the usual motions. I try to afford her some privacy, try to preserve a modicum of her dignity as I watch my naked, frail mother step into a shower. I soap the flannel, remind her to stand on the non-slip mat, urge her to grip the handholds and I stand on the other side of the shower curtain and wait until she says, ‘I’m done now’.

Sometimes people say, ‘You are so good to look after your mum; I could never do it, I wouldn’t have the patience’. But what if there are no choices? What if this is what you promised? Promised her, yourself, your siblings, your promise-me-to-look-after-mum dead dad in a long ago dream?  I don’t always have the patience either. And that’s when I I walk away, pull on my shoes and I walk further and faster and faster away.

But I always go back.

When Mum is done, I turn off the tap, I open the curtain, bath sheet in hand, I instruct her to raise her arms and I wrap her in the towel as she use to me when I was a child, the towel too long for my little-girl body so that I had to hitch it up like a skirt as I walked. 

Later, dressed in her night clothes, as she combs her damp hair, she will tel me how much she enjoyed it, her shower.

Oh good, is all I say. Remonstration is pointless. She will not remember. She does not understand.

I pour us both a beer, I find something to watch on the telly. The same documentary on the royal family that she dismissed as Horrid Germans earlier. She is glued to it for hours.

“This is so good”, she says, “I had no idea, I must watch it again”.

My mother is sometimes beastly to me because her head feels all mad, because her world is tangled and untidy, because she has no idea which end of her story is which and where the middle bits have gone. Because she is exhausted by the constant trying to gather flailing threads of life. And who am I anyway?

Who are you, anyway?

My mother cannot love me anymore; how could she – she does not know me well enough to: most days, I am not her daughter. And oddly it is this fact that makes it easier to forgive her the unkindnesses.

She cannot remember the bruisings her illness delivers. She does not feel any residual ache. Not like me. I keep feeling them long after the blows. 

When I finally collapse into bed, having tucked her in, happy now, full of sweet chat and goodnights, I tell myself what I tell myself most days. 

This is not her, this is not mum, this is her disease. Repeat it like a mantra.

And I remember: I used to do this with Depression too; I used to say: This is not Mum, this is Depression.

She was not there then. She is not here now.

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My Mother the Film-Maker …?

We are sitting in the garden, wrapped up warm against a nipping evening wind, watching the sun sink in the West; it settles itself low in the saddle strung between mountains, cushioned in dust and veiled by a haze so that the twilight is smoked pink. 

Mum observes it intently. She no longer understands the complicated relationship between sun and moon and earth and which revolves around which or whether one or the other revolves around its own axis and how long those revolutions take. She might as well be a sixteenth century explorer wondering at the sun falling off the edge of the earth.

Is it falling into the sea, she wants to know?

Sea?

We are apparently ocean wrapped here. Aboard a ship and bound for some uncertain, unmapped destination.

Yes, the sea.

No Mum, I say, as the last long rays cling to the end of the day as if for dear life, fingerlings of light broad-spread across the far horizon, “we’re a long way from the sea”.

With practise, I am less likely to startle at the things mum says. With practise I am learning to keep up with dementia, which is a curious anomaly given that dementia is all about slowing down and going backwards.

We have a visitor. Mum has explained our relationship to her. 

“I was here for a film”, she says confidently, raising her glass of beer to her mouth to sip and padding her conversation with fiction as has become her habit, ‘And I bumped into Anthea quite by chance. It was very fortunate because then she invited me to come and live with her’.

The friend looks nonplussed.  She has met my mother before – even if my mother fails to recall this – but even understanding my mother’s memory is prone to holes, she has not yet witnessed this new habit of crudely stitching them up with fiction; fabrications which will come undone, of course, and next time the story will be threaded with some new colourful invention.  She is constantly spinning yarns.

Even I am still often astonished at to where these tales come from: A film?!

In fact, I scooped my mother up out of a cold and wintery Ireland in January. I raced there for four days, packed her up and brought her back before she had time to collect herself and resist. 

Then, back then, she mostly (sometimes grudgingly) accepted I was her daughter, she understood her place in this – in this jigsaw of family and fragmented geography – but too many of the bits have been lost since then, kicked beneath the unmade beds and dropped down the back of sofas in my mother’s unravelling mind so that none of them have a hope of ever being found again.  Then, back then, if we flicked open a photograph album, she could still easily identify my brother, whom she lived with for years and years and all through the close-knit lockups of lockdown, my brother and his family.  Now? Now nine months later there is nothing. 

Who’s that?

That’s Rob?

Who’s Rob?

Your son. My brother (always, always; I am always building links, stuffing blocks into the structure of mother’s collapsing cognitive architecture, propping it up).

My son?! (askance)

His children, their children, all of whom she know well, they are gone.

Who’s that?

Sam.

Who’s Sam?

Your grandson; Rob’s eldest (more building blocks, but they are floury with age and crumble in the passing, from me to mum and they’re already undone).

Who’s Rob?

There’s a hole in my bucket and I give up.

A few months ago, Anthony and I went away for a couple of nights. The escape a necessary luxury. We left mum in the care of a minder.

When we got home she asked me where the couple who had lived here before had gone?

What couple?

Well, the ones who lived here before you, she said, impatiently, ‘You know: Them?’

Them?

Us, Ma, you mean us; we’re the only ones who lived here – live here – we’re back now.

She refused to accept we were the same Nice Couple who’d lived here until the weekend. It served as brutal yardstick: Two days, I thought, two days is all it takes for her to forget whole lives.

In the end – her feverish with frustration at where ‘they’ had gone and I exasperated by the relentless argument of it – we agreed to disagree (we do this a lot now). 

And the next day, she has forgotten entirely about any of it.

‘How was your weekend?’ She enquires with a smile.

And then you must just swallow hard, hold your tongue, gloss over it all and tell her: “It was great, Mum, thank you”. 

Sometimes my mother’s explanation as to why we share a home is apparently because she has been generous enough to open hers up to me. 

She has been here for years and years, she announces, and then, “When did you get here?” She wants to know.  She will pose the question politely. Framing it as if she is asking somebody who is not related to her: certainly not her daughter; her stance and expression and tone will speak to formality not familiarity. As if she is holding me at arm’s length. I used to mind. I don’t anymore. It is what it is: dementia. It is not her, it is the distancing by disease.

And so when some sort of exoticism is introduced to our puzzling equation – my mother the film-maker? (“Producer or director, do you think”, my sister asked, giggling, later) Film-goer? – I came here for a film – it lends odd, comic relief.

Yes, I was here for a film, my mother repeats, taking our visitor’s astonished expression as invitation to elucidate, not utter, utter speechless confusion.

Oh, says our guest: ‘How lovely’. For there is nothing else to say.

And it is; this evening, it is.

Dried Leaves and Dried Tears

Every night, when I put Mum’s television on for her, I say, ‘Not sure if you’ve seen this one, Ma, it’s part of a series; I think you might have watched some of the episodes before and enjoyed them’.

Oh OK, she says, settling down.

She’s watched them all. Several times. Some many times. Over and over and over (Anne with an E a case in point). I am learning to stick with what she likes. I remember even if she doesn’t.

A documentary about the Windsors is a current favourite.

Is that the Queen?

Where’s the Queen?

Is she still alive?

Is she married?

Last night: Didn’t we watch this on the ship?

I look at her blankly: “Your know – on the Ship? Didn’t we watch this,” gesturing with a hand flapping in the direction of the television, “this film – on the ship?”

Princess Elizabeth. 1953. Kenya – where she was when she received news of her father’s death and her imminent ascension to the thrown.

Mum. 1953. Kenya – recently relocated there from what-was Tanganyika, what-is Tanzania.

I wonder if Mum watched a newsreel about this. On a ship?  But I think I’m just optimistically clutching at straws: my mother is often adrift at sea now.

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

In the afternoon, a walk round and round the garden. The sun and the wind have conspired to desiccating effect, the wind huffs and puffs and blows all the leaves out of trees which litter the lawn inches deep and which crunch like cold toast as we walk across them. This thrills mum, who clings to my elbow for balance, she is childlike in her appreciation of the sound. Occasionally she gives a small kick and leaves like popadoms spin upwards.

Every time we round the same bend again, mum comments on the same view, again: the valley spills away from us and we can see for dust-dredged miles, Mt Meru a ghost on our horizons.

Which mountain is that, mum asks.

Meru, I tell her.

I tell her that every day. Sometimes several times a day.

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

In the evening Hat calls. She is so distressed she can barely get her words out, her speech wobbly with tears, whatever she is saying is lost to weeping.

I have to keep repeating myself: ‘I’m so sorry, Hat, I didn’t hear that.’

I am always keenly attuned to Hat’s calls and can tell within microseconds, from her first ‘hello’, how she is.  I have answered calls at all times of day and night.  I have blearily stared at my screen, as it casts my complexion yellow, at 3 in the morning and worried that I missed her call at 2.

At the height of the pandemic, when Hat’s crippling OCD spiralled almost out of control, when fathomless anxiety nagged and gnawed as she chewed over and over and over a single incomprehensible but apparently swallowing worry, I kept my phone on me all the time, ringer at full volume. Just in case. Just in case she called.  I have never felt so necessary as a mother. Nor so useless: so far away, unable to get to her or she to me.

And yet she managed, she waded through difficult days, she got the right help, she limped on and has stepped out the other side with her condition better understood and much better under control. 

Yesterday’s tears were not OCD tears. They were ordinary tears. Everyday heartbreak. They reminded me again: there is a difference, between unhappiness and illness.

You can be well and still be sad.

The Conversations You Don’t Have Pt1

Mum used to say, ‘Never put me in a place like this’.

She said it as we stepped over the threshold and through a tall, imposing door into a nursing home – once a stately home, now a facility to care for those in a state of decrepitude. 

The first thing you noticed was the smell; it assailed you as you closed the door, sanitised your hands before sanitizer was a thing. The air was saturated with the scent of whatever was for lunch – which always involved a boiled vegetable, boiled so that it was soft enough to be chewed between gums which meant it was so soft there was no discerning by the palate what vegetable it was in the first place. Cabbage often, judging by the stink.  And then there was the smell of Dettol. Or Bleach. To mask the faint smell of urine.  

Years later somebody would remark to me, ‘I could never have somebody old living with me, somebody old and incontinent: my house would forever be doused with the stink of Old Ladies Pee’ (as if it were a cheap perfume); ‘I’d never get it out of the carpets’. 

The most infirm occupants lived on the ground floor; doors ajar to rooms where they lay prone, expressionless, sometimes their mouths had fallen open so that they reflected the wide O’s of staring eyes. Sometimes they sat slumped in wheelchairs, ranks of them, parked in front of a television raucous with day time television, all augmentative audience and pretending to be pacifist host.

Did they understand a word of it, I wondered, as I walked by, smiling at anybody who looked at me, no matter how vacantly?

‘Never put me in a place like this’, mum hissed again as we climbed the stairs to the first floor where private sun drenched rooms spilled noise and voices into the corridor.

The incumbent we were here to visit had all her faculties, was engaged, engaging. She was just old. Old and broken and mostly immobile.  Mum made a point to visit her as often as she could. To sit for an hour or so. To bring a little of the outside world in which she did with characteristic kindness and grace; she always bore such patience towards the old and the slow. The hour dragged. If I were with her, I’d surreptitiously steal glances at my watch, willing the minute hand a move on.   

And then, when we left, carefully closing the big door behind us as the notice beside it instructed us to (in case one of the inmates makes a break for it do you think, I asked mum once and she laughed, ‘Maybe’) she says it again, “Please: Promise me you’ll never put me in a place like this”.

And yet, on balance The Place was comfortable, pretty, an old vicarage, the staff friendly and kind, the food – vegetables aside – apparently reasonable, the gardens accessible and well tended, the camaraderie amongst the occupants – those who could communicate with one another – evident: a bucolic, gentle place.

Did Mum say it because she thought we might: put her in a home? Did she say it because she thought in preempting the eventuality, she was knocking on wood. Did she really mean: Please never let me be like this: dependent, decrepit? 

There are so many important conversations my mother and I never had. Like what to do when she dies. We didn’t have that one either and now, cognition knotty and so much either impossible to comprehend or forgotten or – usually – both, it’s a very difficult concept for her to grasp and for me to spell out sensitively.

And we never talked about this. We never actually sat down and considered what we might do if mum succumbed to something like dementia, something so life-stealing that you don’t know who ought to look after you and who the people that end up doing so actually are. I just said, in response to her, ‘Never put me in A Place like this’, “Of course not, Mum, we wouldn’t dream of it”.

But we never looked at options, alternatives, never did the sums, never, once, considered the fragmented geography of the family she would come to forget but who would be responsible for her.  Partly because – like cancer and mental illness and any other disease – you don’t think about dementia until it’s a fact of life in your life. Partly because talking about it, if you’re not Touching Wood, is tempting Fate.

I wonder now what she might have said. 

I think – for fear of being a burden – she’d have said, ‘Stick me in a home’.