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O! Let me not be mad

One of the hardest things I now have to deal with is My Loved One’s delusions – yet another thing which people who haven’t had close experience of it don’t realise is, apparently, part of Alzheimer’s.

It is both disconcerting and oddly isolating when someone you’ve known for over five sixths of your life and lived with for nearly fifty years starts burbling nonsense.

I first noticed it last year on the way home from a holiday in Malaysia when, in the middle of the night about seven hours into the twelve hour flight, I was informed that the aircraft hadn’t left the ground and that the airline staff were “messing about”. Incredulously I showed MLO the flight map and told him we were over Russia at 35,000 feet but he wasn’t having it. “You’ve got more faith in British Airways than I have” he spat contemptuously. It took me a long time to convince him.

Does altitude, cabin pressure and so on affect an Alzheimer’s-polluted brain more than it impacts on the rest of us? Who knows. We’re going to Washington DC in September on the grounds that MLO has said he’d like to go back there and I think, in that case, that we’d better do it while we can. I’m apprehensive about what effect the flight might have, though, and am planning to book airport and airline support in case I find myself with a serious delusional problem on my hands.

But perhaps it’s nothing to do with flying. Back home he told me in the small hours after he’d popped out to the loo one night that he couldn’t turn off the bathroom light because “there are people in there”. Then there was the day, a couple of weeks ago, when he phoned me while I was out working to tell me, because he thought I should know straightaway that “Someone has had a baby”. He seemed to think that he had to take charge of said infant. Blimey! Dealing with something like that on the phone from a distance sent shivers though me. “No” I said, taking a silent deep breath and speaking with the assertive clarity and simplicity I used to use for students with learning difficulties. “No one we know is having a baby. I think you’re in one of your muddles. Did you nod off? Have you been dreaming?” After a lot of humming, hawing and broken-off sentences he finally acknowledged that I was probably right.

I think incidents like these are mostly related to dreaming. With hindsight he’d probably been asleep on that flight from KL too. If you or I have a dream we surface, think “That was a bit weird” and get on with our day. It no longer seems to work like that once Ms Alzheimer’s is towering over you.  MLO sleeps, dreams, wakes and then can’t separate the dream from real life. It’s as if his fuddled brain is blurring the boundaries although once he’s fully awake, and I’ve talked to him, he will usually admit that he’s “being silly”. And in a way that’s worse because the realisation is inclined to upset him and goodness knows I can understand why. It must be a dreadful feeling.

At present MLO, poor man, is desperately anxious about the forthcoming surgery to remove the now revoltingly prominent cancerous lesion on his face. He seems to be terrified both of the surgery itself – although he’s been repeatedly reassured that it’s a pretty straightforward, minor procedure – and, understandably, of the possible outcome. “Cancer” remains a very emotive word.

Because he’s so worried he seems to dream about it nightly with the result that he wakes up almost every morning convinced that the surgery is happening that day. One morning last week, for example he opened his eyes and said “Now what?” I patiently suggested that we get dressed and have breakfast as usual. “Isn’t it today I’m going to the hospital?” he asked. On the day that I’m drafting this blog he actually got dressed very early. When I asked why he said he had to be ready to go to the hospital. It now seems to be a daily delusion. It’s like a very young child who hasn’t quite sorted out time and keeps asking whether it’s, say, Christmas yet except that in this case it’s driven by dread rather than eager anticipation. The surgery appointment is 10 July. Thank goodness this particular problem should ease then.

I expect some other dream or delusion will replace it, though. I suppose this is what people mean when they talk about patients with dementia being “confused”. In a bygone, less euphemistic, age they would have called it madness. King Lear suddenly seems very relevant.


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Susan Elkin Susan Elkin is an education journalist, author and former secondary teacher of English. She was Education and Training Editor at The Stage from 2005 - 2016
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