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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She knew every trick to get a home visit – but this time I had come prepared

 Having been conned into another couple of fruitless house calls, I now parry the proffered symptoms and generally get to the heart of the matter on the phone.

I first came across Verenice a couple of years ago when I was on duty at the out-of-hours service.

“I’m a diabetic,” she told me, “and I’m feeling really poorly.” She detailed a litany of symptoms. I said I’d be round straight away.

What sounded worrying on the phone proved very different in Verenice’s smoke-fugged sitting room. She was comfortable and chatty, she had no fever or sign of illness, and her blood sugar was well controlled. In fact, she looked remarkably well. As I tried to draw the visit to a close, she began to regale me with complaints about her own GP: how he neglected her needs, dismissed her symptoms, refused to take her calls.

It sounded unlikely, but I listened sympathetically and with an open mind. Bit by bit, other professionals were brought into the frame: persecutory social workers, vindictive housing officers, corrupt policemen, and a particularly odious psychiatrist who’d had her locked up in hospital for months and had recently discharged her to live in this new, hateful bungalow.

By the time she had told me about her sit-in at the local newspaper’s offices – to try to force reporters to cover her story – and described her attempts to get arrested so that she could go to court and tell a judge about the whole saga, it was clear Verenice wasn’t interacting with the world in quite the same way as the rest of us.

It’s a delicate path to tread, extricating oneself from such a situation. The mental health issues could safely be left to her usual daytime team to follow up, so my task was to get out of the door without further inflaming the perceptions of neglect and maltreatment. It didn’t go too well to start with. Her voice got louder and louder: was I, too, going to do nothing to help? Couldn’t I see she was really ill? I’d be sorry when she didn’t wake up the next morning.

What worked fantastically was asking her what she actually wanted me to do. Her first stab – to get her rehoused to her old area as an emergency that evening – was so beyond the plausible that even she seemed able to accept my protestations of impotence. When I asked her again, suddenly all the heat went out of her voice. She said she didn’t think she had any food; could I get her something to eat? A swift check revealed a fridge and cupboards stocked with the basics. I gave her some menu suggestions, but drew the line at preparing the meal myself. By then, she seemed meekly willing to allow me to go.

We’ve had many out-of-hours conversations since. For all her strangeness, she is wily, and knows the medical gambits to play in order to trigger a home visit. Having been conned into another couple of fruitless house calls, I now parry the proffered symptoms and generally get to the heart of the matter on the phone. It usually revolves around food. Could I bring some bread and milk? She’s got no phone credit left; could I call the Chinese and order her a home delivery?

She came up on the screen again recently. I rang, and she spoke of excruciating ear pain, discharge and fever. I sighed, accepting defeat: with that story I’d no choice but to go round. Acting on an inkling, though, I popped to the drug cupboard first.

Predictably enough, when I arrived at Verenice’s I found her smiling away and puffing on a Benson, with a normal temperature, pristine ears and perfect blood glucose.

“Well,” I said, “whatever’s causing your ear to hurt is a medical mystery. Take some paracetamol and I’m sure it’ll be fine in the morning.”

There was a flash of triumph in her eyes. “Ah, but doctor, I haven’t got any. Could you –”

Before she could finish, I produced a pack of paracetamol from my pocket and dropped it on her lap. She looked at me with surprise and admiration. She may have suckered me round again, but I’d managed to second-guess her. I was back out of the door in under five minutes. A score-draw. 

Phil Whitaker is a GP and an award-winning author. His fifth novel, “Sister Sebastian’s Library”, will be published by Salt in September

This article first appeared in the 23 June 2016 issue of the New Statesman, Divided Britain