smile and act normal

‘You wouldn’t think it, but I’m seventy myself.’
Sam’s right, of course. With her metallic white hair cut jaggedly short and swept back in spikes, her sharp shirt, skinny jeans and fluorescent trainers, I’d have put her at fifty, tops.
‘My knees are worn out. Every few weeks I have to have a needle in my eye because of the macular degeneration. Which means I can’t drive. So I have to take the bus over here every day. And you know what buses are like. It takes me the best part of an hour there and back, twice a day. On top of that I’ve been living in the hospital most nights ‘cos my son in law had an accident and my daughter’s not coping. Plus my own life to sort out. Which needs a LOT of sorting out, these days.’
She takes a breath, staring off into the bright fall of afternoon sun through the window. ‘And I’ll tell you something else,’ she says, trailing off. ‘I’ll tell you something…’
Her chin begins to tremble and she has to turn away.
‘Sorry,’ she says, pulling a tissue from her pocket. ‘Sorry about this.’
‘That’s okay. I can see it’s hard.’
‘Hard!’ she says, with a bitter laugh. ‘Childbirth was hard. Divorce was hard. This is bloody impossible!’
She blows her nose and bins the tissue. Gives her head a little shake.
‘There!’ she says. ‘Now. Good. Where were we?’

We talk through the situation. How her mum Avril is ninety-eight, increasingly frail and forgetful, not eating or drinking, falling more often but refusing to accept any of the practical changes that might improve her situation. She went into hospital for a few days after the last fall. Being discharged today and expected home by ambulance any minute. Although there’ve been a lot of false starts and mix-ups as far as THAT goes. Anyway – Sam is the main carer for her mother, with a little private top-up help from a family friend. Sam has Power of Attorney, thank goodness, which is something, a small victory. But so far it hasn’t helped all that much in practice. Avril refuses to talk about residential care, even for respite, whether for her benefit or – more significantly – for Sam. Things have been staggering on like this for a while. It’s not getting any easier.
‘She was always bloody minded,’ says Sam. ‘I suppose it’s how she’s lived to such a ripe old age. It’s probably what’s kept her going all these years. I mean – It’s not like she’s any different now she’s old. In some ways I think she’s actually more of herself than she was. Which sounds odd, but you know what I mean. Do you?’
I nod and say I think I do.
‘Some things have changed, of course. She repeats herself a lot. Over and over. If I hear that story one more time of her in the air raid shelter with the GI and the rabbits I’ll scream. But essentially she’s still Mum. Which is what makes it so hard. Don’t get me wrong. I love my mum and I’d do anything for her.’
Sam laughs again.
‘Like get the bus twice a day! Anyway – enough of my moaning. Let me show you how I’ve organised her laundry…’

I follow her into the hallway. She opens an airing cupboard where a water heater is surrounded by shelves of slacks and vests, everything ironed, neatly stacked and lined up, orderly piles of pants and socks, a clutch of enormous bras hanging down from the top shelf like outlandish nests.
‘What d’you think?’ she says.
‘Wow!’ I say. ‘Pretty organised. You do an amazing job.’
‘You know what? I think I do,’ she says, giving the clothes a long, proprietary look, then slowly closing the door.
The buzzer goes. She stiffens.
‘That’ll be mum,’ she says. ‘Smile and act normal.’

families, eh?

This is the situation. Deidre is a ninety year old woman blessed with good health, for the most part, living independently in a warden controlled flat, with only a domestic to run the vacuum over and have a bit of a tidy up on a Monday, and one or other of her sons to go shopping with her every Wednesday and the occasional days out. Unfortunately, Deidre suffered a series of falls over the last few weeks, the first almost inevitably leading to the second, and then a third, and although she escaped with nothing more serious than extensive bruising, her confidence is shot. She’s taken to her chair. There’s been something of a decline.

Deidre’s been referred to us by her GP for the usual interventions, the physiotherapy to get her strength back, the equipment to help with mobility, pharmacist to review meds, social worker to look at care needs and even a mental health nurse to test her cognitive function and chat about how she’s feeling. It’s all pretty comprehensive.

The trouble is, if the patient doesn’t want any of these things, and they’ve got the mental capacity to make that decision, there’s not much you can do about it.

And of course, Deidre doesn’t want any of these things. She won’t even consider changing her chair.

I’m not saying Deidre’s chair doesn’t look comfortable. It’s a low, luxurious, thickly-padded affair, more like a giant baseball glove than a piece of furniture. It’s the kind of chair you drop back into from a height, and land in a fixed position, and then face as much of a struggle to get out again as a breech-birth baby lamb.

Deidre’s two sons, Derek and Ian, are both here. We’ve all tried to persuade Deidre to sit somewhere more suitable. There are sensitive and subtle issues at stake, though. I’m sure it’s less about a chair and more about what it stands for, a loss of self-determination, increased vulnerability and dependence – even just an acceptance of her own mortality. It would be easy to make the chair into a symbol and lose the battle, like those stories you hear about regiments being sacrificed just to hold on to a tattered flag.

I retreat, and let the sons have a go.

Watching them, you’d never guess they were brothers.

Derek is thin, measured, quietly economical. He moves like an ascetic community monk in jeans and sweater, patiently hearing what everyone has to say, and then considering his response, hugging his knee, gently rocking backwards and forwards.

Ian is red-faced. I want to put my hands on his shoulders, take a breath, and then undo the top button of his red checked shirt, because otherwise I’m worried his head will explode. He’s so hot his glasses keep steaming up, and he wipes them clear with a handkerchief he whips out of his pocket. He even has angry feet. For some reason Ian’s not wearing any socks, and I have to say I’ve never seen such wild and livid toes, the kind you might expect to see on the feet of a devil, stomping about the cinders in Hell’s front room.

‘Will you listen to the guy?’ he says, shoving his glasses back on and then waving the hankie in my general direction. ‘That’s why he’s here, Mum! To help get you better.’
‘I’m not getting rid of this chair!’
‘But it’s not suitable, Mum! I wouldn’t be able to get out of that thing, and I’m not ninety.’
‘No. You’re not.’
‘Why won’t you sit in the other chair?’
‘Because it’s not mine.’
‘You can’t spend your whole life down there.’
‘We’ll see.’

He storms off into the kitchen.

Derek considers for a moment.

‘It mightn’t be for long, you know,’ he says. ‘Just until you get the strength back in your legs.’
‘I’m not getting rid of this chair.’
‘No-one’s suggesting you get rid of it, Mum. We’re just saying it’s a good idea if you use Dad’s old chair for a while. It’s easier to get in and out of.’
‘This is my chair.’

Derek smiles at me.
‘Mum’s always been very – how shall I put it? – sure of her own mind,’ he says.
‘I can see that.’

It’s always interesting to see the differences between siblings, the roles they’ve been allotted to play. Derek the calm, Ian the furious. I wonder if it’s conditioning, or simply down to genetic luck. Was there a point back in time when the young Deidre and her husband decided in some unconscious and unspoken way, that Derek was fundamentally like this, and Ian essentially like that? Or is it all down to the pull of a handle on a genetic fruit machine? The spinning of ancestral drums, the lining up of chromosomes, flashing lights, oohs, aahs, and a baby with angry feet spilling out.

‘I’m amazed you can keep your cool!’ says Ian when I go into the kitchen to ask him something.
‘It’s easier when it’s work,’ I say. ‘You should see me with my mum.’

living in the dark

Mrs Butterworth is wearing a cornflower blue chenille dressing gown, its plump collar falling open at the neck. She talks in a soft, sadly undifferentiated way, like fog flowing over the brow of a hill. And whilst she talks, she gently rubs the side of her tummy, in the unconscious way pregnant women sometimes stroke their bumps, although the last time Mrs Butterworth was pregnant it was back in the sixties, and the swelling in her abdomen is now diverticula disease. Behind her on the wall is a photograph – the seventies, I’d guess, with Mrs Butterworth in the centre, smiling brightly, her arms left and right around a smart looking boy standing straight-backed, and a younger girl with bright yellow hair, leaning forwards, her face a little out of shot.

‘Gilly’s not a bad daughter. She’s got her own problems. It goes back a long way. It’s all diagnosed. She’s been on Prozac for twenty years or more. Who knows what she’d be like if she ever came off. She’s had therapy and a few stays in hospital, but nothing seems to do the trick. She’s just fundamentally unhappy, I suppose, and I can’t help blaming myself. But it’s just – I don’t know – what with my recent scare and all this and that, I wish it could be different. Like normal families. My eldest child Peter, he lives in Australia, and he does what he can from there. He rings every other day and whenever his business takes him this way he makes a point of stopping over. What do you need? he’ll say. Just like that. Name it. He’s such a good boy. You wouldn’t think they came from the same place. I know he gets cross with Gilly, but he holds it back because he knows it’ll only make things worse. There’s nothing anyone can do. It’s just such a shame. She only lives three streets away but I’ll tell you something: Australia seems closer. I haven’t seen her since January. To be fair, she did come to the hospital with me that time, when I went in for the operation. I mean – it was a serious thing. They didn’t know if I’d come out of it. I had to sign papers. And the morning of the operation, there I was, sitting in bed waiting to get wheeled through, with this terrible thing hanging over me, and Gilly was pacing up and down, sighing like she does, checking her phone every five seconds. And then she turns round to me and she says I can’t wait here all day. I’ve got things to do!  And she left. And that was that. I didn’t make a fuss. I knew it wouldn’t help. I told Peter about it and I know he was furious, but what could he do? I think he did ring her, though, because when I was discharged she came over to see me. I kept the conversation as light as I could. I mean – what was there to say? But my grandson, James – not the most prepossessing boy in the world. Well James was sitting on this chair with his head down in his phone, jabbing away with his thumbs, and it was all very quiet, so I just thought I’d ask him about school. Right! That’s it! she said. I don’t have to stand here and listen to this! And they left. And that was the last I heard from them. Although I did try ringing her last week, when I needed a bulb changing in the living room. Her husband Trevor answered the phone. Well. He’s not what you might call an attentive son-in-law. Do you know what he said to me? He said Can’t you just stand on a ladder and do it? Me! On a ladder! That’s okay, Trevor I said. I’m getting used to living in the dark.’