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.
Reluctant Memsahib 
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