Kicked in a stomach by a horse

As I said in my last post and with hindsight my Dad started to change from around 2014/2015. It was very subtle at first but I do remember some key things.

He no longer seemed happy at work, which was unusual, he had some odd financial ideas and his ability to drive a car abroad seemed strangely hindered (something he’d always loved doing and we’d all taken for granted).

I also remember an incident when my youngest daughter was a baby. After a massive struggle to get her to sleep I heard her crying. I went to her and my Dad was standing in the room with her and had woken her up. Any young mum can tell you about trials and tribulations or trying to get a 9 month old off to sleep when they are teething or have a cold, it’s not easy but I couldn’t seem to get my Dad to understand that she needed to sleep.

I think truthfully that for me was the turning point I knew then that something was very wrong. It was just so illogical and totally out of character for someone who had always been so precise and considerate. I thought it might just have been stress or that he was an over enthusiastic grandfather, you find a way of explaining things to yourself don’t you. Looking back it was so out of the ordinary though.

Then in June 2017 my life changed forever.

Mum who had lived through my Grandads illness had started to see the signs for herself, history was starting to repeat itself. Being the research queen that she is, Mum ensured Dad was referred to a specialist in London in dementia. It had dawned on us at this point that this could possibly be linked to my Grandad who passed away mid 50s but was not diagnosed with FTD as it was not recognised then.

I remember Dad had been to hospital to have some tests and we were waiting for the results. I knew deep down what it was going to say.  The day came when he got his diagnosis. I was at work with two of my best buddies, thinking of nothing else but trying to convince myself I was fine.

You always know you have a good friend when they can just look at you know you’re not ok and also know exactly what you need. They delivered some well timed distractions, like a cup of coffee and a bag of maltesers, a kind smile and a few reassuring words. It did the trick on many occasions in the months that followed as I struggled to come to terms with my dad’s diagnosis.

Septmber 2017 – “Its Genetic”

In another way his diagnosis was a relief. There was an explanation for his behaviour, a rationale behind his thoughts, a reason why he had suddenly decided to walk 6 miles across Ashdown Forest in the dark, put on a jacket in a shop and left without paying, let the dogs out of the garden and had developed a mammoth appetite, declaring “I could eat as much as a horse”. Which does not really do his appetite justice. All of this could now be understood and we could learn about the condition and of course treat him or so I thought.

Then came the devastating blow at another hospital visit, you dads condition is a degenerative condition for which there are currently no treatment or cure and not only that, they found out it was genetic and that means you have a 50% chance of developing it in the future. 

Brilliant, it never rains but it pours, I remember thinking. My Dad still believed at this point even though deep down there were moments when I think he knew something was different, that there was nothing wrong. There are no words really to describe how that news feels. The way I would sum it up is, it’s like being kicked n the stomach by a horse. Which if you have ever been kicked in the stomach by a horse you will know is gut wrenchingly painful. I should add that as I love riding I have also been kicked in the stomach by a horse literally so I can make this comparison.

The nurse looked at me, my Dad and my Mum and I could see the pity etched on her face. They try not to show it, but it’s a natural human reaction. After all they know whats coming and their heart goes out to you. Im fine I thought, if its 50% Im bound to have it, that’s just how luck and me work, that was my first reaction to the news that it was genetic.

However the little voice on my shoulder said …..ah but you might not, this time you might be lucky…..

Lucky is a funny word isn’t it? No one can ever be described as being lucky to have, live with or be affected by dementia, but in a way now 2 years on from this point and now writing the posts you are reading, that’s exactly how I feel. The reasons why will become clear.

If you would like to support the campaigning work I am doing you can make a donation at my Just Giving Page Here.

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