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Such stuff as nightmares are made on

Vivid dreams – effectively nightmares – are one of Ms Alzheimer’s less welcome bestowals. And I hope the people who think this dreadful disease is just memory loss and cognitive decline are listening.

Whenever My Loved One falls asleep he disappears into a weird, disconcerting alternative world. And he sleeps a lot: most of the night and increasingly often for a couple of hours in the morning, afternoon or sometimes both. He’s perpetually tired and, now often also complains of feeling dizzy or says he has “the shakes”. When he surfaces he’s lost to me, sometimes for several hours, and the last ten days or so have shown a sharp decline.

Take the night last week when I drove to Canterbury to review Glyndebourne’s touring production of La Traviata. MLO should have been with me but decided on the day (like the Duke of Edinburgh except that HRH is 97 not 73) that he didn’t feel up to it. I rang him on the hands free as I left the Canterbury car park after the show. “I’ve had a terrible evening” he said agitatedly and in considerable distress. “People are coming and I’m really worried. I’ve phoned the NHS mental health people and they’ll be here soon to take me away” I knew immediately he’d been dreaming and that he couldn’t possibly have phoned anyone – he’s no longer capable of looking up a number and dialling it independently. So I went into teacher/professional mode and simply kept him talking, reassuring him until he seemed calmer. It took to the Medway Bridge to achieve that by which time I was only 40 minutes from home.

Since that night I’ve been repeatedly told that a crime has been committed and that we shall both end up in prison and that he can hear voices in the house and once he has to get to the bank for George (referring to his father who died four years ago). Sometimes it can be quite funny. When I pressed him about the aforementioned crime, at a less confused time when he’d been awake for a while and wasn’t quite so distant and distrait, he told me it was bigamy. “Gosh! How exciting” I said. “Perhaps we should write a novel because it’s all fiction. Neither of us is a bigamist. Trust me!”

One morning, also last week, he woke up very puzzled – he often thinks we’re in a hotel or holiday let and that he can hear other guests. I said firmly “No. There’s nothing to worry about. Nobody lives here except you, me and a big tabby and white cat”. Pause while he processed the information and then: “Well, it would have been frowned upon even 30 years ago.” My turn to be bemused: “What would?” Him: “Living together like this” Well that did make me laugh. I held up my left hand and said as cheerfully as I could: “Darling, we’ve been MARRIED for nearly FIFTY YEARS. Wedding rings and all that. We’re having a family celebration in the spring”. It was his reaction that chilled me. “Oh really?” he said clearly surprised and unconvinced.

It’s both hilarious and utterly tragic because in his more lucid moments (and even that is relative) he knows that sometimes (often) he talks nonsense. “I have a different narrative running in my head for much of the time” he said recently and, on another occasion “It’s as if I’m two people isn’t it?” Yes, dead right it is but I’m seeing the “normal” one less and less often. My least favourite thing is when he wakes me in the small hours stumbling round the bedroom in a panic because he can’t remember where the bathroom is or anxious and alarmed by something in his alternative world he can’t explain to me so I have to talk him back to calmness. A couple of nights ago I was out of bed with him half a dozen times between midnight and 3.30 am – it reminds me of having a fractious baby again but I was 24 and 28 when I dealt with that I knew it would only be for a few weeks. It’s not quite like that now.

So, we have to do things differently from here on. I shall obviously have to rethink some of my work habits. I am frequently out all day and all evening and that’s too long to leave a man with worsening dementia alone in the house. It was all right for a while but it isn’t now.

I am also looking into what is euphemistically called “help”. I need to hire a very reliable person who will “mansit” while I’m out in the evenings. Various avenues to explore. I certainly don’t want the standard “carer” who drops in for ten minutes, mutters some hearty platitudes and races off to the next client.

Sometimes I dream too – of how things once were – as an escape from the nightmarish reality. The other day I was just walking out of the door and realised I hadn’t made sure MLO was wearing one of the just-in-case pads I prefer him to wear when I’m out.  “Have you got a pad on?” I asked. “I think so” he said uncertainly. Hmm. Without thinking, I undid his fly to check. It felt vaguely familiar. What did it remind me of?  Oh yes (blushing, but not much) I remember … a very long time ago (or so it seems) … and in a completely different life …

Who was it who said that a young man needs a lover and an old man a nurse?. Been there. Done that. All of it. From romantic frisson to incontinence pads.

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Susan Elkin
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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