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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Voters are turning against Brexit but the Lib Dems aren't benefiting

Labour's pro-Brexit stance is not preventing it from winning the support of Remainers. Will that change?

More than a year after the UK voted for Brexit, there has been little sign of buyer's remorse. The public, including around a third of Remainers, are largely of the view that the government should "get on with it".

But as real wages are squeezed (owing to the Brexit-linked inflationary spike) there are tentative signs that the mood is changing. In the event of a second referendum, an Opinium/Observer poll found, 47 per cent would vote Remain, compared to 44 per cent for Leave. Support for a repeat vote is also increasing. Forty one per cent of the public now favour a second referendum (with 48 per cent opposed), compared to 33 per cent last December. 

The Liberal Democrats have made halting Brexit their raison d'être. But as public opinion turns, there is no sign they are benefiting. Since the election, Vince Cable's party has yet to exceed single figures in the polls, scoring a lowly 6 per cent in the Opinium survey (down from 7.4 per cent at the election). 

What accounts for this disparity? After their near-extinction in 2015, the Lib Dems remain either toxic or irrelevant to many voters. Labour, by contrast, despite its pro-Brexit stance, has hoovered up Remainers (55 per cent back Jeremy Corbyn's party). 

In some cases, this reflects voters' other priorities. Remainers are prepared to support Labour on account of the party's stances on austerity, housing and education. Corbyn, meanwhile, is a eurosceptic whose internationalism and pro-migration reputation endear him to EU supporters. Other Remainers rewarded Labour MPs who voted against Article 50, rebelling against the leadership's stance. 

But the trend also partly reflects ignorance. By saying little on the subject of Brexit, Corbyn and Labour allowed Remainers to assume the best. Though there is little evidence that voters will abandon Corbyn over his EU stance, the potential exists.

For this reason, the proposal of a new party will continue to recur. By challenging Labour over Brexit, without the toxicity of Lib Dems, it would sharpen the choice before voters. Though it would not win an election, a new party could force Corbyn to soften his stance on Brexit or to offer a second referendum (mirroring Ukip's effect on the Conservatives).

The greatest problem for the project is that it lacks support where it counts: among MPs. For reasons of tribalism and strategy, there is no emergent "Gang of Four" ready to helm a new party. In the absence of a new convulsion, the UK may turn against Brexit without the anti-Brexiteers benefiting. 

George Eaton is political editor of the New Statesman.