The Punchbag

Mum is full of frustration and rage this morning.

She storms in behind where I am sitting at my desk.

'Sometimes', she says, 'I could just break this bloody thing in half'; her iPad is held between both hands. I imagine she may slap it down with force on my desk and indeed break it in half so I put my hand out to take it from her.

What's the matter? I ask

It won't ring. When somebody calls me on the telephone, my computer won't ring. So I keep missing them.

Skype.

She relies on it heavily. Her single easy (usually) connection to the world - given her geography and her inability to read or write easily - means it is precious and tenuous.

As soon as I begin touching icons on the screen she demands, 'what are you doing, what are you doing to it?'

Trying to fix the problem, mum.

I'm going to call you, I say, and I bring my own Skype account to my screen

There's no point in doing that she says, furious, impatient as if I have not understood, I won't hear it ring.

I know I say, as calmly as I can, but unless I call you I won't know whether I've fixed it or not.

She hovers which puts me on edge. Often she demands, 'if you would only show me, if somebody would only show me how to use this bloody machine I wouldn't have to keep asking'.

I have shown her dozens of times.

Mum, I say as gently as I can, why don't you leave this to me, I'll fix it. But i can't fix it with her peering over my shoulder asking cross questions that I can't answer.

She acquiesces. Leaves my room. Goes outside. I hear her taking it out on the dogs now - my young labrador is inclined to greet people with happy whimpering and sticks as gifts, oh don't be such a bloody baby she snaps.

I sort the problem out - the result of her frequently furious directionless swiping and tapping random icons, she's muted it.

I deliver it. It's sorted,  I say.

She glares at the offending tablet I've put down beside her, 'why don't they give you a bloody instruction book on these things' she demands. I don't know, I sigh (but I do not add, you wouldn't understand it even if they did, Mum).

She eats toast mutinously and then I notice she has begun to cry. 

I don't know what to say. Or do.

It's ok Mum, lots of people struggle with these things. I do, I say. (Which is not true).

Later, with her skype up and running, she makes happy calls and cheerfully reports back that she has spoken to so and so and they said such and such.

I smile and acknowledge her news. I am happy that she has reconnected to the bigwideworld via the worldwideweb.

But I want to cry. I feel wounded. I am the only one she can lash out at it.  But I'm also the only one who can help. And she cannot understand so I cannot remonstrate.

Blind Sided

I hear a crash from the other side of the door.

I hiss at Ant, 'what do you think it is that time?'. He smiles, shrugs.

Once, a few months ago, I'd have run to Mum's aid, hastily collected up dustpan and brush to whip the fragments of the latest casualty away.

I don't anymore.

I hear her curse herself: oh you stupid bloody woman. And then I hear the soft sound of sweeping, punctuated by the odd deep sigh.

Mum's stroke left her with right sided hemianopia, That means that she has lost the right sided sight in both eyes. A black curtain drawn across each. I try to mimic what she can see by winking my right eye tight shut. No, her therapist tells me on one of the sessions I attended with her when Mum was in rehab, what she can see now looks like this and she holds up her iPad for me to see two images drawn side by side. One is obliterated down the midline: that's what your mum's field of vision looks like now, she says.

We practise a bit after that, my little sister and I, to understand what Mum can see and what she cannot. We place mum centrally and one of us stands a few meters to her left, one the same distance away, to her right. Can you see me Mum, asks my sister to her left. Yes, perfectly, says Mum, confidently. Me? I ask, standing at her right. No. I take a step towards what would be the centre of her sight. Now, I ask hopefully. Nope.  Three more steps. Now? No, says Mum, sounding worried. Mum does not see me until I am almost directly in front of her. It is as if I - on her right (or wrong as it turns out?) side - was torn clean out of a photograph of the three of us. 

For a long time after Mum's stroke we learn to guide her, one of us walking to her right and slightly ahead, policing obstacles, buffers to oncoming corridor traffic. Slowly she learned, as her doctors told us she would, to compensate for her Blind Side.

But because Mum's stroke also robbed her of her ability to remember well, she forgets her sight is compromised.

Which is why we have breakages. Right handed, she frequently puts her glass or mug down on her right side. And she frequently knocks it for six, the contents spill, the vessel shatters and Mum curses herself, oh you stupid bloody woman.  Sometimes, surreptitiously, I try to nudge the glass in front of her so she can see it but this small task in damage limitation must be done with stealth so as not to embarrass her, treat her like a child.

I tell her, Mum, it's only a glass, it's only a mug, it's only a jar of marmalade (as it was this morning).

But for that split second, as the silence splinters, Mum is reminded, painfully, jarringly, of her handicaps.

It's why I no longer leap to help her clean up. I have told myself that in giving her the space, a little time, to recover her composure, to find a dustpan and brush, I am granting her the confidence that she can do this herself, that she bears the independence and the ability to clean up, even if she can't always remember that she can no longer see perfectly, even when she forgets to put her mug or her glass directly in front of her.  Even when she breaks things.

And in giving her a few minutes to recover herself, I protect myself from the momentary rage that flares in her.

There is so much that is hard about caring for a parent who is sick or old or ailing or compromised.  I think, though, that one of the hardest is treading the fine, fine knifeedge line between giving mum the support she definitely needs whilst also allowing her enough space to know she still can be: independent.

It's trying to fathom, often in a single splintering second, whom it is you're dealing with that day: patient or parent.

The Hazards of Toast and Roasties

Mum says, with confidence, over lunch:

'They have found a new disease'.

Mum is a newshound. She watches, listens, avidly.  Podcasts, the television, printed headlines which she labours through. The news has always informed her breakfast time conversation.  

That hasn't changed. Except that now, now she is less reliable in her delivery of the news.

'What's that?' I ask.

I am also a news aficionado; I'm pretty sure I know what she is going to tell me.

'Well they have found it in a small animal', she says, 'this new disease; they get it from toast that is too brown and roast potatoes'.

This conversation is already veering towards the insane.

I am not sure which small animals regularly eat charred toast or roast potatoes.

She means cancer: scientists believe that - along with red wine and red meat and all the other good stuff in life, toast and chips and roasties give you cancer now too.

'Not cancer?', I question, hoping I might rein this back towards something that makes sense.

'No love, not cancer'. She delivers this with patronising authority. Partly because she is certain of her knowledge. Mostly because she is not.

I am beginning to learn not to argue.

But I am a slow learner.

The other day, on a long drive home, through country my mother has driven through only once in her entire life, she told me confidently, 'Oh look!' and she points enthusiastically out of the window at a building, 'that's where we had lunch with A'.

A is my daughter. We had lunch with her, certainly, but not there, not in that forgettable building; we had lunch in another building, in quite another country.

I respond too hastily (because I am too slow to learn).

'No we didn't, Mum, not there, not that building'. And I regret the words as soon as they're spoken.

But she is insistent. Distress is quickly evident in her rising tone. 'Yes we did'.

I try to soften my correction by telling her that we had lunch with A, certainly, and that perhaps the building where we ate lunch looked a little like the one she has spotted.

'I'd know that building anywhere', she says, 'and whatever you say, we had lunch there with A last week'.

She is angry. Partly because she is certain of her knowledge. Mostly because she is not.

I sink back into my seat and feel sick because my mother's memory is in tatters, it unravels in knotted threads of psychedelic colours so that there is no cohesion and because her intellect is so blunted that her arguments are small and infantile now, reduced to what she does remember and muddled by what she does not.

My only comfort is that this conversation, this upsetting, brief, confrontation, will be forgotten by her very soon. As so much is.

Who's Who?

Mum says, 'Who's Hugh?'

Who's who.

She asks all the time. Who's who?

I tell her, 'Hugh is my brother in law'.

Oh, she says.

She considers this for a moment.

'Is he married?'

Yes, I tell her. I told her yesterday. And the day before.

'Does he have children?'.

Yes I tell her. I told her yesterday. And the day before.

'He has four', I say.

I try hard to be patient. I don't say, 'Mum, I told you yesterday - he has four ...'.  I try to sound as if this is not a conversation we have had a dozen times in three days.

An hour later.

'Who's Hugh?'.

He's my brother in law.

'I don't think I've heard you talk about him before, have I?', Mum asks,  looking just a trifle doubtful.

No, I say, I don't think so.

This is the hardest part of living with a parent with a failing, fading memory: there is no continuum to our conversations.

She does not remember who the key protagonists are in any of my stories.

Feathers

Mum says, over breakfast, when I ask what has caught her attention - she is staring, fixedly - into the middle distance.

'That plant', she says, gesturing the lemongrass in a pot, 'what can I see beneath its feathers?'.

Leaves, Mum, I say, 'beneath its leaves'.

Beneath its leaves, Mum confirms, apparently unfazed.

Nobody else at the breakfast table seems to notice, least of all my husband who nonchalantly continues to plough through bacon and toast.

Only I feel the belly kick.

Feathers for leaves.

Do I take every slip, every wrong word, every lost name, as a sinister step into the dark. Away from me. From us.

When we were small, on a farm in Africa, the generator was turned off at ten every night and a hurricane lantern was lit to illuminate our way to the outside loo. When it was turned off and I watched the glow fade, I was struck by the fragility of the mantle from which that hot bright light had emanated all night.

If I touched the mantle it would disintegrate as dust between my fingers.

Sometimes I worry mum's mind is as a mantle. The hot bright light of her dazzling intellect has faded and what is left is gossamer thin and brittle .