Brenda was troubled by shadows in broad daylight. Photo: Getty
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The tragic tale of a holiday never taken

A swift death and antimacassars that turned into faceless people meant that Aubrey and Brenda never got to take the holiday they craved.

A few months earlier, Brenda had been diagnosed with Parkinson’s disease, but the nebulous back pain that prompted the request for a home visit wasn’t a result of that. As I asked more about her symptoms, I became conscious of an air of bewilderment about her. I started to wonder whether depression – common after any significant diagnosis – might be part of the picture.

Throughout the discussion her husband, Aubrey, stood awkwardly off to one side, in a no-man’s-land midway between her chair and the doorway, as though unsure whether to stay in the room or leave it. He made a couple of brief contributions, but in the main he just listened. When I asked Brenda whether she was still enjoying the things she usually loved in life, she turned to him and – somewhat accusingly – commented that they rarely went away any more. I could sense some issue between them but I didn’t know what it was.

Aubrey came to see me in surgery soon afterwards. He’d found a lovely convalescent home, he said, and he wanted to take Brenda there for a six-week break. The thing was, he needed me to complete a health form for them. I had no idea there was such a thing as a convalescent home still in existence – the idea seemed quaint, Victorian. But there it was: on the front of the pamphlet was a line drawing of an old manor house in the Home Counties that now served as a sort of genteel hotel-with-nurses.

Leave it with me, I told him. I was touched by the way he’d responded to Brenda’s complaint about her restricted life. By the way, he said, wincing as he stood up to go, I’ve been suffering with some of that backache, too.

Aubrey’s back pain, in contrast to his wife’s, worried me: new in onset and with no cause, affecting the upper spine, worse when lying down, waking him from sleep. An urgent MRI revealed advanced lung cancer eroding his vertebrae. At some point while waiting for the scan results I did fill in the convalescent home forms for him, but he and Brenda never got to go. Over the next five weeks he declined rapidly, and died peacefully at home.

Their daughter, Jill, rallied round during the crisis, but had to pick up her normal life after Aubrey died. Problems quickly became apparent. Brenda’s meals generally didn’t happen unless prepared for her and supervised, and she frequently forgot to take her Parkinson’s medication, or took the various sets of pills laid out for the day all in one go. Then there were the evening phone calls: Brenda ringing Jill repeatedly, distraught about the faceless people sitting in the chairs in her lounge, or loitering in her hallway.

We arranged emergency respite care while the true picture emerged. Rather than “pure” Parkinson’s disease – which affects the substantia nigra, a region of the brain principally concerned with movement – Brenda was suffering from Lewy body disease. This often presents as Parkinson’s initially, but within months other areas of the brain begin to be affected, producing a pattern of dementia that is quite distinct from more common forms such as Alzheimer’s. The visual cortex is frequently involved, and about three in every four Lewy body sufferers experience marked visual hallucinations. Brenda’s brain was misperceiving the coats on the pegs, and the antimacassars on armchairs, and turning them into grotesque, featureless-faced people that she alone could see.

Although Lewy body disease develops more rapidly than other types of dementia, the degree of difficulty Brenda was experiencing did not come on overnight. When I talked about it with Jill, it made perfect sense of several incidents over the preceding months. It became apparent that Aubrey had been coping with, and covering up, his wife’s symptoms for some time.

Spouses frequently “compensate” for their partner’s dementia for considerable periods without involving professionals. The reasons – to do with denial, fear, shame, loyalty and stoicism – are complex. Not infrequently a dementia diagnosis is apparent only when something happens to destabilise the situation – a hospital admission or, as in this instance, the spouse’s untimely death.

I think back to that home visit, Brenda with her nebulous back pain, Aubrey wavering between her chair and the sitting-room door. I sensed indecision in him. How long had he been coping with her distressing evening hallucinations, organising her meals and medication, keeping the outside world at bay? It must have taken a toll. Was he fearful that she might let slip something that would expose the extent of her problems? Or was he secretly hoping it might happen, a way for him to get help without the guilt of admitting that he needed it?

That six-week break stays in my mind. I remember thinking a convalescent home was a bit over the top; they would have been fine in a normal hotel. Aubrey knew better, though, and I admire him for it. With Brenda’s visual hallucinations and fluctuating confusion, having nurses on hand would have been reassuring. He had organised the perfect holiday, and I only wish they’d got to enjoy it.

This article first appeared in the 14 May 2014 issue of the New Statesman, Why empires fall

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Andy Burnham and Sadiq Khan are both slippery self-mythologisers – so why do we rate one more than the other?

Their obsessions with their childhoods have both become punchlines; but one of these jokes, it feels to me, is told with a lot more affection than the other.

Andy Burnham is a man whose policies and opinions seem to owe more to political expediency than they do to belief. He bangs on to the point of tedium about his own class, background and interests. As a result he’s widely seen as an unprincipled flip-flopper.

Sadiq Khan is a man whose policies and opinions seem to owe more to political expediency than they do to belief. He bangs on to the point of tedium about his own class, background and interests. As a result he’s the hugely popular mayor of London, the voice of those who’d be proud to think of themselves as the metropolitan liberal elite, and is even talked of as a possible future leader of the Labour party.

Oh, and also they were both born in 1970. So that’s a thing they have in common, too.

Why it is this approach to politics should have worked so much better for the mayor of London than the would-be mayor of Manchester is something I’ve been trying to work out for a while. There are definite parallels between Burnham’s attempts to present himself as a normal northern bloke who likes normal things like football, and Sadiq’s endless reminders that he’s a sarf London geezer whose dad drove a bus. They’ve both become punchlines; but one of these jokes, it feels to me, is told with a lot more affection than the other.

And yes, Burnham apparent tendency to switch sides, on everything from NHS privatisation to the 2015 welfare vote to the leadership of Jeremy Corbyn, has given him a reputation for slipperiness. But Sadiq’s core campaign pledge was to freeze London transport fares; everyone said it was nonsense, and true to form it was, and you’d be hard pressed to find an observer who thought this an atypical lapse on the mayor’s part. (Khan, too, has switched sides on the matter of Jeremy Corbyn.)

 And yet, he seems to get away with this, in a way that Burnham doesn’t. His low-level duplicity is factored in, and it’s hard to judge him for it because, well, it’s just what he’s like, isn’t it? For a long time, the Tory leadership’s line on London’s last mayor was “Boris is Boris”, meaning, look, we don’t trust him either, but what you gonna do? Well: Sadiq is Sadiq.

Even the names we refer to them by suggest that one of these two guys is viewed very differently from the other. I’ve instinctively slipped into referring to the mayor of London by his first name: he’s always Sadiq, not Khan, just as his predecessors were Boris and Ken. But, despite Eoin Clarke’s brief attempt to promote his 2015 leadership campaign with a twitter feed called “Labour Andy”, Burnham is still Burnham: formal, not familiar. 

I’ve a few theories to explain all this, though I’ve no idea which is correct. For a while I’ve assumed it’s about sincerity. When Sadiq Khan mentions his dad’s bus for the 257th time in a day, he does it with a wink to the audience, making a crack about the fact he won’t stop going on about it. That way, the message gets through to the punters at home who are only half listening, but the bored lobby hacks who’ve heard this routine two dozen times before feel they’re in the joke.

Burnham, it seems to me, lacks this lightness of touch: when he won’t stop banging on about the fact he grew up in the north, it feels uncomfortably like he means it. And to take yourself seriously in politics is sometimes to invite others to make jokes at your expense.

Then again, perhaps the problem is that Burnham isn’t quite sincere enough. Sadiq Khan genuinely is the son of a bus-driving immigrant: he may keep going on about it, but it is at least true. Burnham’s “just a northern lad” narrative is true, too, but excludes some crucial facts: that he went to Cambridge, and was working in Parliament aged 24. Perhaps that shouldn’t change how we interpret his story; but I fear, nonetheless, it does.

Maybe that’s not it, though: maybe I’m just another London media snob. Because Burnham did grow up at the disadvantaged end of the country, a region where, for too many people, chasing opportunities means leaving. The idea London is a city where the son of a bus driver can become mayor flatters our metropolitan self-image; the idea that a northerner who wants to build a career in politics has to head south at the earliest opportunity does the opposite. 

So if we roll our eyes when Burnham talks about the north, perhaps that reflects badly on us, not him: the opposite of northern chippiness is southern snobbery.

There’s one last possibility for why we may rate Sadiq Khan more highly than Andy Burnham: Sadiq Khan won. We can titter a little at the jokes and the fibs but he is, nonetheless, mayor of London. Andy Burnham is just the bloke who lost two Labour leadership campaigns.

At least – for now. In six weeks time, he’s highly likely to the first mayor of Greater Manchester. Slipperiness is not the worst quality in a mayor; and so much of the job will be about banging the drum for the city, and the region, that Burnham’s tendency to wear his northernness on his sleeve will be a positive boon.

Sadiq Khan’s stature has grown because the fact he became London’s mayor seems to say something, about the kind of city London is and the kind we want it to be. Perhaps, after May, Andy Burnham can do the same for the north – and the north can do the same for Andy Burnham.

Jonn Elledge edits the New Statesman's sister site CityMetric, and writes for the NS about subjects including politics, history and Daniel Hannan. You can find him on Twitter or Facebook.