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.
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