A Stormy Mind

Stepping out with Lewy Body

The path is wet. The February storms have left debris scattered in the garden. A fence panel is down. Two of the neighbour’s trees are at 45 degrees… ‘On the piss’, a builder might say.

Whilst the wind is still gusting, a break in the weather has bought some welcome sun, so we’re out here, father and son, taking baby steps; learning to walk.

But this isn’t learning that comes with rewards. The only toys we’re packing are the paraphernalia of old age and a grim resilience that we’re doing something to help. Well, we’re doing something. The walking frame, my Dad and me.

He is four months into recovery on a broken hip. More poignantly, he has dementia with Lewy Bodies. The anaesthetic from a spine procedure five years ago might have sparked it off. The fresh dose from the hip-op has left his neurology reeling. Anaesthetic and advancing years don’t mix, but who knew? Not enough of the NHS unfortunately.

About 2 years ago it started to become obvious there was a problem. The initial diagnosis was Mild Cognitive Impairment. They soften it up for you with the ‘mild’, like a limp pint of warm ale.

Later it was reclassified — dementia… Alzheimer’s… probably. The diagnosis as vague as the patient. I guess that’s the way — it’s a fuzzy science.

Most notably he was veering drunkenly through space. Lewy Bodies mess with spatial awareness, balance, vision… Yet thankfully, the well publicised ‘who the hell are you?’ of Alzheimer’s hadn’t surfaced.

A couple of weeks ago I asked for clarification — post op it seemed like Parkinson’s. Then a programme on a King Lear production struck a chord — the speculation on Lear’s Lewy Body symptoms echoed what Dad was going through.

What I’d not accounted for in this old age tragedy is the bleak comedy when it comes to everyday actions: What do you mean by ‘sit down’? Walking? Think of new words. Take a step, up the step. No, the step — you go — oh, forget it. Ah, you have…

Language gets swallowed by the surreal. Normally unconscious actions are frozen by choice. How do you sit down? Confusing isn’t it. Go on — how do you actually do it? Rephrase, and repeat.

By the greenhouse, craning his neck, Dad looks up. ‘Dad, try and look to where it is you want to go’ I say, pointing at a cheerfully coloured ball blown in from next door.

He fights the stoop the disease carves for him, before recoiling to shuffle at a snail’s pace, eyes on his slippers squelching the path… Suddenly he’ll be off with a burst of inexplicable speed, like an excited infant on the first steps of life’s adventure. Like he’s going drive that walking frame straight off the path, across the veggie patch and into the hedge.

Being that Mum and Dad have lived here since the late 50’s, I wondered how this view would look contrasted against the memory of my Dad taking me on my first steps down this pathway — as I’m sure he must have. In the early spring wind (Dad picking up the slack when nature’s gusts drop) the father-son relationship has changed.

One night when I tucked him up in bed he looked out from his covers, ‘I’ll return the favour one day’. But I’m the one with the debt on that score.

Whilst no-one would choose this for their parents, there is a curious bitter-sweetness to our role reversal. I’ll take solace in the fact that some people lose their parents at a painfully young age. Barring input from on-high, he won’t get better, and despite the physiotherapists and drugs — he’ll remain as on-the-piss as the neighbour’s trees.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=113