My Dad’s a Goldfish – making a movie

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Well, a DVD. I was asked to take part along with some other carers and some Alzheimer charity and nursing staff. We’d gather in small groups to chat over tea and biscuits about different topics and the things we’ve found which work for us.

The topics included communication, eating and drinking, washing and dressing and moving around. The idea behind it was to create a film which would be useful for other unpaid carers like us as well as health and social care practitioners. I was with the eating and drinking group.

We were told it would be very informal and we shouldn’t bother about tarting ourselves up so I didn’t. Everyone else did. The camera focussing on us made us all a bit nervous to start with but it wasn’t long before we’d forgotten the camera and were chattering non-stop. Carers always have plenty to say!

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From the DVD insert – I think you can see we all had plenty to say!

Some people with dementia seem to stop enjoying food – and we talked about ways of encouraging them to eat and drink. Although the Goldfish never lost his appetite, even when he had to be spoon fed, we had issues when he was unable to swallow and with getting him to drink enough. My top tips were mini sized Mars ice cream bars for when swallowing was a problem – the cold ice cream triggered the swallow reflex. It could, of course, be any ice cream but we found those worked best. Sometimes, I would yawn very widely and this made the Goldfish yawn – and swallow!

We were once shown on a training course various ways to re-set the swallow reflex, one of which was to gently stroke a finger down the person’s cheek. I tried this several times but it didn’t work and I felt it was my fault, that I wasn’t doing it properly. When we were filming I told the trainer, who was in my group, that for future training days I’d like to see things like this done with a real person. It’s horrible feeling useless when something doesn’t work.

We strayed off topic a couple of times which was fine because we were all learning useful things – and what wasn’t relevant could be edited out later. I was complaining about how difficult it is to get the Goldfish into the car. We’d bought one of those twirly cushion things which didn’t help in the slightest. One of the women in my groups said, ‘The best thing is a plastic fertiliser bag. They are nice and thick and slippery.’

I could visualise how well it would work but, ‘Where do you get fertiliser bags?’

She smiled and said, ‘I’m a farmer’s wife.’

We were invited to see the film after the first edit when it was still too long and it was fascinating to hear what things worked for other people. I was interested in hearing how people can’t make a point and leave it, they repeat it over and over as if trying to emphasise it when in fact by doing so what was a very good point is lost.

Some of us helped with editing the transcripts for the final cut and then we all gathered in a hotel for the premiere. It was entered in a competition but didn’t win – but, hey, we created something which may help other carers find a solution to a problem.

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The DVD: This Worked For Me

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My Dad’s a Goldfish – if only I’d known

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I’m currently reading Being Mortal: Illness, Medicine, and What Matters in the End by Atul Gawande.

Here’s a quote from the back of the book blurb “…what it’s like to get old and die, how medicine has changed this and how it hasn’t, where our ideas on death have gone wrong. The systems that being-mortal-illnessmedicine-and-what-matters-in-the-endwe have put in place to manage our mortality are manifestly failing, but, as Gawande reveals, it doesn’t have to be this way. The ultimate goal, after all, is not a good death, but a good life – all the way to the end.”

I’m only half way through it yet and his expose of modern medicine’s ‘we’ll fix it’ approach is depressing (though doesn’t surprise me and although Gawande is writing about USA, it is the same here in the UK). There’s such ignorance of what people really want at the end of life and tremendous barriers put up whenever people do try to recreate the home environment. It’s very readable and I highly recommend it.

The reason for my ‘if only I’d known’ comes from a story about an elderly couple, Bella and Felix. While eating lunch, Bella begins to choke. Felix, a retired geriatrician explains. “As you get older, the lordosis [I had to look it up: the term lordosis refers to the normal inward curvature of the lumbar and cervical regions of the human spine] of your spine tips your head forward,” he said. “So when you look straight ahead it’s like looking up at the ceiling for anyone else. Try to swallow while looking up…”

If only I’d known to encourage the Goldfish to look down when eating my previous post on swallowing might have been different.

Still, no acquired knowledge is ever wasted: I’ll store this little nugget for when I get old.