Rob McFadden shares raw truth about dementia battle
More than 100,000 Australians suffer from this cruel disease, with one Sydney man revealing the impact of hallucinations and disturbing dreams.
The “distressing” dreams are one of the worst things about having dementia for Rob McFadden.
The charming Sydney man approaches much of the symptoms with a sense of humour but could really live without waking up terrified at 3am with his heart racing.
People always “want to stab me” in the dreams, he reveals, and one in particular sticks with him where the last image is a woman with scissors inches from his face.
“That’s the point where I wake up and for a second or two she’s there. Now you’re sweating, your heart rates up. Sometimes you can’t go back to sleep. Sometimes you can,” Mr McFadden, who is throwing his support behind news.com.au and The Australian’s Think Again campaign, said.
After studying psychology at university, Mr McFadden enjoyed a successful career in marketing while raising eight kids with his second wife Carol.
But it all came to an abrupt end at 57.
“I developed some neurological issues that took me from having a large number of people report to me overnight to being retired, which was a bit of a shock to the system,” he said.
The now 70-year-old said he initially had headaches, which he put down to working long hours in a stressful job and coming home to a house full of noisy children.
But then more serious issues began to happen.
One day in particular sticks out. After a fairly blemish free driving record he clipped a bollard on the way to work and then he couldn’t find a way to get to his boss’ office despite glass windows and a direct line of sight to him.
“That’s the point where I went there’s a lot more to this than headaches and getting a bit of visual disturbance,” he added.
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“I pulled the pin and soon after that I developed extreme balance problems and nausea.
“My wife was working so I was at home on my own and some of this I didn’t tell her because it was just too much worry. To get from my bed to the bathroom, I had to crawl. I couldn’t stand up and I had to crawl with my eyes closed.”
But it still took ten years for Mr McFadden’s dementia to be officially identified despite his forced retirement.
A battery of tests uncovered he had a significant loss of grey matter in his brain for his age and he was diagnosed with Lewy body dementia.
More than 100,000 Australians have this type of dementia, according to Dementia Australia.
He said he was initially “stunned” by the diagnosis as he felt too young and there is no cure.
One of the symptoms of Lewy body dementia is hallucinations which Mr McFadden said “freaked” him out at first, although they aren’t “terribly vivid”.
“You see people in the room who aren’t clearly defined, but they’re people. They don’t have a definitive face in terms of nose and eyebrows but they’ve got a face and they’ve got a body and arms and legs. They don’t do anything. They don’t chase me. They just stand there,” he said.
“I do hear voices – whenever I tell people that, they always back away a little bit. I don’t hear the devil wants you to kill everybody in the room. What I hear, it’s almost like people are in another room talking and you pick up some words in the conversation and then they’re really quite dull. Nothing exciting has ever happened in my aural hallucinations.”
But he said his dreams bother him.
“Most of the time for me, some bastard's trying to kill me, which is disconcerting because it’s so vivid you actually think you’re awake and it mimics your room,” he said.
“I tend not to tell people the details because they’re kind of distressing.
“Somewhere around three o’clock seems to be the witching hour. Occasionally I’m up here watching mindless TV at three o’clock in the morning trying to numb my brain and go back to bed.”
The dad-of-eight has a dark sense of humour which helps him cope.
“Like I talk to people about my mate Lewy – Lewy and I did this. I send my kids reels that are a bit silly,” he revealed.
“Like I’ve brought my family into it because isolation is just a killer regardless … So I send them little reels like, don’t you hate it when the voices in your head are arguing and then they lose their place and you have to start all over again? That's relevant to me and they laugh. I don’t know whether on the inside they groan, but they share the humour with me.”
The couple have 11 grandchildren, aged between 21 and three years old.
Unlike those early days, Mr McFadden no longer needs to crawl but he does have a “tenuous relationship” with walls and doors.
“I think I’m walking through the doorway quite happily until I slam into it there and I often have bruises down a part of my body or on my legs where I’ve walked into the edge of the table. It’s not that I’ve stumbled, sometimes it is, but it’s generally just because I’ve misjudged where the edge is,” he said.
He said his memory is “fuzzy” such as putting his food in the fridge rather than in the microwave to heat it up, he can struggle with word selection, gets tired in the afternoons and concentrating is a massive energy drain, both mentally and physically.
“I’ve got a few compulsions, one of which my wife Carol’s very fond of. I hate seeing any kind of crumb or stain on the kitchen bench, like a rim from a coffee cup,” he said.
“Quite a few times a day I’m in there with my cloth and there might be a small bit of fluff on the floor or something. It’s not a dirty house, but I’ll have to pick it up. I can’t not pick it up whereas 10 years ago, I could have walked past it for a month.”
For his wife Carol, she started to notice something was wrong when Rob started to pout his bottom lip, stare off into space and stop touching her as he walked past me or give her a cuddle when she was standing at the sink.
“He has always been a very affectionate and loving man and this was out of character for him,” she noted.
She said she would also notice that her husband of more than 30 years would drift off at times into a daze and had always been a calm man but then would have “explosive episodes if something didn’t go right”.
When Rob received his diagnosis, Mrs McFadden said it was devastating and she found it particularly “brutal” that they received a letter saying he should get his affairs in order adding to their “shock”.
“I’m not really trying to think too far into the future. In some way that’s denial … I don’t want him to ever have to go into care. I’m a bit emotional about that,” she said crying.
“Rob of course says to me, when I get so bad you are not to ruin your life and look after me, and that upsets me.”
Her husband is the “love of her life” and Carol said she is a natural born carer, with a 49-year-old son with a disability, who she has looked after too.
Yet her husband’s dementia diagnosis is like “watching a loved one slowly disappear little by little”, she said, although at the moment they are living a happy, normal life.
“It’s a long grieving period for both the person with the dementia and their loved ones,” she added.
“I’d like to urge people to get tested early if they think there might be some cognitive changes. Whilst the long term outcome might not change there are some drugs and methods that may delay the decline.”
But a dementia diagnosis isn’t the end game, added Mr McFadden.
“If I tell somebody I’ve got dementia, they kind of look at me a bit weird. You’re not confused, you’re not lost, you’re not struggling or telling me the same story over and over again. All those things that most people are judged to be the markers of dementia. But there’s a lot that goes into dementia – the hallucinations, the depression, the anxiety, all those sorts of things are there,” he said.
“Sometimes there’s discrimination against people who have dementia and they’re not doing anything deliberately to upset you. Their behaviour might not suit you, but I guess people don’t know what to say. Just acknowledge the reality and say that sucks.”
Mrs McFadden also wants Aussies to be more empathetic towards people with dementia and to know they are still there.
“Just to treat the person the same as you always have as hard as that might be,” she said.
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