Saturday, April 15, 2017

The Irony of Forgetting

Mum cannot manage the remote control for her television.

Nor can she work the DVD player.

She does not remember what she has seen and what she has not.

Sometimes, she laughs, when I proffer a disc, 'not sure if you've seen this one, Mum?', even though I am and she has; 'Oh put it on anyway', she'll say, 'I'll probably have forgotten what it was about'.

So this evening I suggest The Iron Lady.

Mum looks blank.

I prompt: Margaret Thatcher? First female PM?

Shadows of recollection flicker across her face, as if a veil is being twitched aside, to let the light in: she remembers.

I stick the disc in and press play. We sit and wait.

An addled Maggie shambles onto the screen, bemused, confused, buying a pint of milk.

Mum does not remember this compromised old lady. She remembers her with a spine of steel, a shrill, dictatorial, dismissive, usually disdainful, tone

The waiter stands to the PM's left; what will you have madam? The beef or the chicken?
She considers for a moment, 'the chicken I think'.

And for the vegetables?

She sweeps an arm to indicate her cabinet, seated to eat with her, 'oh, they'll have the same'.

This lady, in headscarf, counting pennies at the till is not that lady.

I explain, 'she sunk into dementia at the end of her life'

Mum looks stricken, 'how awful', she says, 'how dreadful for those whose lives are lost with their memories'.

Do I weep? Do I smile?

I cry quietly a long time later and know I must I be grateful that mum is beginning to forget she cannot remember.

Wednesday, March 1, 2017

Borrowing Courage

I am sorting through DVDs for Mum to watch. She struggles with managing a remote control now, can't remember which button does what. Sometimes she resists changing channels incase she finds herself lost in a snowstorm. Discs are easier and make for reliable viewing.

She has had enough of David Attenborough for now, she says. She loved it, she said, but what about one of those and she gestures the pile beside The Frozen Planet.   'Those look good', she says, 'I'll try one of those'.

She has seen them all. But I don't say that. Instead I say, 'oh mum, silly me, I ought to have made a note of which ones you've seen before and which ones you have not, I can't remember'.

Mum waves me away, 'oh don't worry', she laughs, 'even if I have seen then, I'll have forgotten anyway'.

I need to learn to face her fragile memory with the courage that she does.

Friday, February 17, 2017

Spread too Thin

If you asked me, what's the hardest thing about caring for your mum, what would I tell you?

That it jars every time I discover another lost memory? That's hard.

That is maddens me when she ties herself in knots over the Wretched iPad? That's frustrating.

That I must hang onto my patience when she asks me the same question at lunchtime that she did over breakfast? Yup.

But the hardest, the very most difficult? That'd be the perpetual juggle between managing Mum and managing my marriage. I tread a tightrope between the two and it's exhausting and draining.  And I live in dread that I may fall off and row with one or the other or create even more tension for it is there; this rope I tread is pulled taut.

Two different people  - my partner, my parent - with two very different sets of needs, agendas, timetables. Demands.

I remember this feeling as a mother - when my children were little, when everybody needed a piece of me and the piece they needed had to fit a different shape at a different time. I was as butter spread so thin you could see through me sometimes.  I was as a jigsaw made of a thousand pieces which sometimes I lost or tried to force into the wrong space.

Of all the things I considered when Mum came to live with us, this was not one of them: that the feeling of being pulled in a million different directions would sustain, feel harder, leave nothing of Me.

Sometimes, sometimes when the day has been fragmented by the demands of the two people I live with so that I write late at night, jagged,  I want to run away, I want to run away and hide and gather myself up so that I can be whole and strong.


The prompt for this post? Next week, BBC4's Woman's Hour are running a series of programmes on the emotional challenges of caring ...

Monday, February 13, 2017

Bad Memories

I prompt mum.
'You remember? You remember...'
And I cite an occasion, a place, a person.
Often she looks blank but then, so as not to disappoint me because, apparently, judging by my insistence, the way I nudge her arm and fix my gaze upon her, it's important to her daughter that she remember, she says 'Yes', obligingly, obediently, but her brow is creased with a question mark.
I know when she really does remember and when she does not.
And so sometimes, if her humour is good, if she is well rested, if I am confident that pressing harder will not cause distress, and if the remembering is important to the tale I am recounting so that we can indulge in some continuum to the story, I add more detail, to the occasion, the place, the person. I hope that in colouring the picture in, I may throw it into sharper relief so she really will remember.
And then, sometimes, as I accentuate my description with detail, delight floods her expression, 'oh yes!', she exclaims and then I know she really does remember.
And then it feels like a small, delicious victory.
Mum and I are walking, we are talking about things that have been.
'You remember Mum? You remember ...'
She thinks then tilts her head and smiles, 'Sometimes', she says, 'sometimes I don't remember everything and sometimes I think that's a good thing; I think I have forgotten some of the things that used to make me sad'.
And I laugh. 'That's good, Mum; bad memories aren't worth hanging onto.'

Sunday, February 12, 2017

The Importance of Useful Occupation

I encounter Mum in the garden. She is pacing, a hanky in her hand, red-eyed.

You ok Ma? 

No, she says, not really.

What's up Ma?

Oh I don't know; I just feel so bloody useless. I can't do anything.

And her eyes fill and spill.

When my mum cries I feel afraid; I associate her tears with months and months and months of deepdarkdespair where she is quite lost to our reach.  My mum has rarely articulated normal sadness - the transient kind, the kind that comes and overwhelms and then goes. Even when my dad died my mum carried on in her dry-eyed, straight-backed stoic way, making necessary decisions, making sure we were all ok. Because she was well.

When my mum is sad, somebody tiptoes across my grave and my hackles rise.

When mum had her stroke I asked her neuro, does this mean, does this huge trauma to her brain mean she will not suffer from Depression again?  I was sure that a strike substantial enough to rob her of an ability to read would also steal away melancholy.

No, he said, different part of the brain, he said.

But Mum has been well since her stroke. A paradox. Thin, frail, confused in the early months but essentially well - better, certainly, than she had been in the preceding two years when Depression had gnawed away at mind, body, soul so that her eyes were enormous and afraid in a thin face, so that she had to use a safety pin to secure trousers which sank at her waist.

I take Mum's arm and guide her around the garden.

Why do you feel useless, Mum? I ask (as if I need to: she can no longer navigate a book easily, or her ipad or the remote control, cannot remember much, can no longer drive, manage her own money, most days she cannot recall the name of the places she has lived and where she lives now).

Because, she says, I can't even write a letter.

Sometimes, sometimes, on days like this I cannot know which is worse: my mum who is so lost she mostly does not know where she is - other than with me, in the place I live so that I can be relied on to remind her where she lives - or my mum, with her sharpasatack intellect swallowed by such wretchedness all she could do was read - and read she did, losing herself in fat tomes that lent brief respite from desolation.   There is no great genius without some touch of madness, so said Aristotle.

Mum misses her words and her books. She misses them terribly.

And she can no longer touch type - which she once did with such haste her keyboard clattered a tune of happy, occupation, because the connection between her fingers, her eyes and her brain is more tangled now so that it all becomes an exercise in tearful frustration. For a while we tried to dictate letters to the screen but as an entirely alien entity to her, it was even more difficult to learn to use than the Wretched iPad. In the end we settled upon hand written notes, my mother has always written in a beautiful measured hand, which I photograph and send as emailed attachments to whomever it is she would like to communicate with. It's a system that mostly works well. Until she comes upon a letter she has written, re-reads it and stomps around the garden enraged and weeping, 'because I wrote such bloody rubbish that he/she will think I am quite stupid'. Because she has repeated a phrase, misspelt a word. When she was first admitted to hospital writing her name was a challenge and drawing a clock face rendered a neat numbered roundness to something abstract and Picasso ish.

Nobody thinks that Mum, I say quietly. But not being able to read with the ease with which she once did - now it is an exercise in labour, not love - and not being able to write with ease and grace and eloquence as she once did is further evidence to herself that she is Useless.

We continue to walk and it occurs to me that gardening does not need reading or writing, it needs only sight and interest and perhaps a packet of seeds and a pair of secateurs.   If I, I wonder, create for her, a small potting shed where she can watch lavender grow, witness the new green buds pop from cuttings of bougainvillea and geranium and the gorgeous shrub whose name I don't know and which sits deadly, disinterested and uninteresting all day only to begin to spill the most glorious perfume at precisely 7.45 even evening, if I create for her a small space surrounded by greenness that needs tending and nurturing and encouragement, will she then feel less Bloody Useless.

This is the tragic bitter irony of advancing age. The fierce human want to remain engaged and vital and helpful and useful and the appalling despair that comes with losing the ability to do all the things that you once did unthinkingly: reading a book, writing a letter.

Monday, January 30, 2017

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.


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.

Sunday, January 29, 2017

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.