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 ...

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.'

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.