Alzheimer’s is basically a forest fire in your brain
The comedian opens up to ELIZABETH ARCHER about the demands of caring for ageing parents
AS THE news of the coronavirus pandemic in the UK broke, Rhod Gilbert raced to a care home inWestWales to help his dad Malcolm, who is blind and has limited movement after a heart attack.
“The care home locked down earlier than everyone else and we got a message saying not to visit,” says Rhod, who splits his time between London andWales with his wife, comedy writer Sian Harries.
“Because he can’t see and he can’t move I got him one of these smart speakers.
“I shoved this thing through the window along with a wifi modem while I stood out in the rain at about 10 o’clock at night, telling these carers how to set it up.
“He’s had an audiobook a day for the last six weeks or so.”
Sadly, Rhod doesn’t know whether his brief glimpse through the window will be the last time he sees his dad.
“Whether we’ll see him again, I don’t know. He knows that if the virus gets into the care home he’s extremely vulnerable. In his words: ‘If it gets in here then I’m a goner’.”
The pair are close and speak on the phone most days. “The care home has Skype now but I said to dad: ‘What’s the point? You can’t see me and I don’t want to look at you with crumbs all down your jumper’,” Rhod quips.
It has been a difficult few years for Rhod, who lost his mother Norma to Alzheimer’s in 2016.
SPEAKING over a video call from his home in Wales, the comedian is thoughtful. “It’s tough,” he says of Norma’s decline. “You start to notice little differences, like somebody asking you the same question 10 minutes after they just asked you.At first you just chat among your siblings and ask if they’ve noticed it too.
“After about two or three years of obvious memory loss it was diagnosed officially as Alzheimer’s.”
The disease, he says, is cruel. “Alzheimer’s is basically a forest fire in your brain so your brain gets eaten away by this thing until in the end, you can’t feed yourself, you can’t go to the toilet, you can’t do anything really.
“It got progressively worse until her memory was on a 20-second loop. She’d ask you how you were and then 15-20 seconds later she’d ask again.
“It’s very tough because you’re watching somebody die in front of you for years.You’re watching a slow decline.”
Luckily, Norma recognised Rhod and his two siblings until the end. “I sat with her for three days while she died and she recognised me until the last minute, I’m pretty convinced of that.”
Just weeks later, Malcolm had a heart attack. “As soon as she died he had a heart attack because he’d just done too much. He was exhausted,” says Rhod. “When he came out of hospital, he had four carers a day but in between that me and my brother and sister and the rest of our family were looking after him 24 hours a day.
“He was in the lounge – blind, incontinent. It was absolutely savage for all of us.We were almost driven to the brink of collapse.”
Eventually Malcolm was admitted to a care home, where he now lives. “The day we got my dad into a care home was a sigh of relief for everybody. He was being looked after by people who knew what they were doing instead of us trying our best to cope.”
Last year, Rhod decided to try working as a carer for a week, both in a care home in Barry and doing home visits, for a new series of his BBC show Rhod Gilbert’sWork Experience.
“I got choked up straight away because seeing the residents with
Alzheimer’s and dementia took me straight back to sitting with my mum when she was like that,” he says.
Despite this, Rhod describes his stint at the care home as being “some of the best days of my life”.
“When I got to the home, the first thing they said to me was that I’d have fun.
“It’s very easy to focus on how difficult it is, but it was such a laugh and there’s so much life left in people.And I think the role of a carer is to maximise people’s limited lives.
“The rewards were incredible too – like getting a three-toothed smile from Merv, one of the residents.”
The episode was due to air later this summer but has been brought forward due to the current crisis.
“I filmed it last year before coronavirus and it feels like a very different show now. It feels like a real tribute to carers,” says Rhod.
“Anybody who’s tried caring for one of their loved ones will know just how demanding this job is.You are almost everything to that person – their friend, their chef, their nurse, their cleaner, their adviser. You can’t put a value on it. We don’t value carers enough financially or give them enough support and respect.”
RHOD, 51, suffered a mini-stroke himself a few years ago. “It was pretty scary. I had no idea what it was. I was on the toilet minding my own business when all sorts of weird stuff started happening.
“My arm threw itself up in the air and started waving at nobody, then my face sort of collapsed and I was on the floor.The way I describe the pain on stage is it’s like getting your brain stuck in a zip.”
Incredibly, it was a week before Rhod saw a doctor. “Now I know that you ring 999 immediately if that happens, but I didn’t at the time, so I rang my GP and made an appointment for a week later.
“I ended up in a stroke clinic in London and I was in and out of hospital for a year.”
Rhod touches on these health issues in his stand-up show The Book Of John, with a portion of the profits going to the Alzheimer’s Society and the Stroke Association.
As a comedian, he feels well placed to open up a conversation about subjects which are hard to broach, including male fertility issues, after he discovered he may not be able to have children due to a low sperm count.
“Men often don’t talk about medical problems and many men are especially reluctant to discuss fertility, as they fear ridicule.
“Humour allows them to control the narrative and own it, which facilitates them being more open about it, whether that is with family and friends or the medical world.
“We desperately need men to be more willing to talk about it.
“[In my show] I talk about infertility, strokes, my dad’s heart attack... but hopefully it’s funny.”
● Rhod Gilbert’s Work Experience is available to stream on BBC iPlayer now.