Alex’s dad, Dave, was diagnosed with early onset dementia eight years ago at the age of 60. Alex reflects on how her dad came to terms with his diagnosis, and how the coronavirus pandemic has affected their relationship.
‘She will keep you young Dave’, my dad was told when he found out he was going to become a father again for the third time at 42. I don’t think anyone was expecting him to be kept quite as young as this.
Dad met my mum, Lynda, in 1971 and they married in 1975. They had a happy marriage. My brother, Arron, came along in 1979, followed by my sister, Natalie, in 1982. Just when they thought they were done with kids, in 1993 I decided to make a surprise appearance! Three children born in three different decades; they must have been mad!
My dad is now 68 and has the mind of a child, body of an older man, but the heart of a lion.
Changes in dad
I was 19 when my dad was first diagnosed with dementia, aged just 60. He was a successful engineer with his own company and worked all over the world. Intelligent, an avid sportsman, a great husband, and an even better father.
We noticed that dad was making a few mistakes at his work and his speech was ‘off’. Doctors first suspected that he had a brain tumour from the symptoms but after numerous tests and brain scans the news that we never expected to hear came back – he had early onset dementia and progressive aphasia (which was affecting his speech).
I didn’t understand – my dad wasn’t old? Dementia is a disease that affects old people, right?
The next couple of years were a bit of a blur. We tried to carry on as normal but there was an elephant in the room. My dad was becoming harder to understand as he slowly deteriorated.
The worst part of the process was how embarrassed my dad was and how much he tried to hide it at first. He had always been a proud man, and the term ‘one of the lads’ fitted my dad’s personality. He loves watching and playing sports. He loves cricket and is a massive Manchester United fan – he has never missed a game. He used to enjoy socialising in the pub with friends, and he was always the one cracking jokes.
He had a great job, a great social life, and was the man of the house. He worked hard and made sure his family were taken care of before he did anything for himself.
I know there is no such thing as perfect, but if there is such a thing as the perfect father, I would say it was my dad.
Coming to terms with dementia
Once my dad stopped being embarrassed and came to terms with what was happening to him, he started being honest about his condition and stopped living in fear of someone finding out.
I’ll never forget the first time I heard him tell an old colleague about his diagnosis when we bumped into him in the park: ‘I have that dementia now me’, he struggled to stutter. I remember at that point I had to pretend to tie my own shoe whilst I quickly wiped away the tears flooding down my face.
After my dad stopped working and he had his driving license taken off him, things started to change quickly, almost overnight. The journey from diagnosis to where we are now feels like a fog and I can’t remember how we ended up here.
Dementia has a chain reaction – it doesn’t affect just the individual diagnosed, but the whole family. It’s been hard on us all but one person it has been really hard on is my mum. I can’t imagine how difficult it has been for her to watch the man she fell in love with over 45 years ago disappear in everything but his physical presence.
I’ve always been a daddy’s girl, the apple of his eye when I was growing up. Seeing the man who you once relied on so heavily struggle to speak, dress himself, and live in a constant state of confusion is heart-breaking. I dread the day he forgets who I am.
I feel angry, but I have no one to direct my anger towards. I feel robbed. I am just entering the prime of my life now and my dad may still physically be with me but the man I grew up with is gone.
My dad may never walk me down the aisle, my dad won’t know my children, and my children won’t remember my dad.
The funny thing about dementia is that memories are what the person is struggling with, but memories are all you have, and you are constantly trying to create more, even if they won’t remember them, they are what you cling on to.
My dad still goes to every Manchester United home game, he loves dancing and if you put the Beach Boys on for him, he can move and grove like he is back in the 70s. Seeing my dad happy is my family’s main priority. We know we don’t have much time, so we want to make sure he has the best time possible.
Coping with the coronavirus lockdown
My mum, brother, sister and myself are all carers for my dad now. In our own individual ways, we all help him remember the man he once was and keep on creating beautiful memories with him.
Since the country’s gone into lockdown because of the coronavirus pandemic, things haven’t been going well. My dad is stuck in the house with my mum and my mum won’t let his carer visit to support him as my mum is at high risk of illness herself.
My dad says that ‘every day of my life is lockdown since the dementia – I haven’t been able to go out on my own or drive for years!’
My dad struggles to use the phone and he can’t really use FaceTime so it’s hard to communicate with him without being face to face. He’s used to seeing me and my siblings every day usually.
At first, he was scared, and he was panicking saying he was going to die from coronavirus. He also started hallucinating and talking back to the news readers on the TV.
Over the last few weeks this has thankfully calmed down. It seems now all he is missing is his independence and his family, but we are all doing our bit, dropping food round when we can and ringing him daily.
It was my birthday last week though, and he turned up at my back door with presents which melted my heart as he actually remembered. I had five minutes to catch up with him through the window which was lovely. He still asked for a cuddle and the look on his face when I had to tell him we couldn’t was heart-breaking.
Hopefully things will be back to normal in a couple of weeks and we can have a family get together. I can’t wait for all of this to be over so I can give him a big hug again!
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