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#6 There's a mouse on my face!

A new week is here which means it's time for a new blog. I'll admit, I've been procrastinating lately (buying Gregg an xbox hasn't helped either, I've somehow become addicted to Call of Duty: Modern Warfare and now see myself as a fully fledged soldier).


My biggest problem however (and I've mentioned this in a previous blog), is struggling to remember events in order. I'm trying hard to capture everything I've been through, but a lot has happened in the last 3 years and each story has its own backstory. Without knowing the backstory, the actual story wouldn't make sense. In summary, I've found it hard deciding on what to write about next, making sure it's easy to understand and ensuring you have all the necessary information.


To deal with this, Gregg and I spent this morning looking back through old messages/emails to put a timeline of events together. It's been an interesting process and has brought back lots of feelings. I haven't really looked back before, and now I have I'm surprised at what I've been through. For example, I always say '2018 was the best year of my life'. Why wouldn't it be? I got promoted at work, I travelled, got married and had an incredible honeymoon in Thailand. In actual fact though, 2018 could possibly be one of my worst years. I must have subconsciously shoved the 'bad bits' to the back of my mind, only now remembering when I remind myself. I weirdly fail to acknowledge what also came with 2018; the stress of seeing mum decline, the stress of organising a wedding, the stress of doctors appointments, feeling totally alone and the panic attacks (oh, the panic attacks). Reading back through those messages brought all that back and, once again, I felt my heart beating faster than normal. The best way to describe it is like there's a ball of burning emotion in my chest. I've never really learnt how to get rid of the 'ball', but I find that having a meltdown with a few tears and a couple of screams chucked in does help. I sometimes wake up and the ball is gone (this is most of the time now), but I'm not naive enough to know it's permanently gone. When things are tough, the 'ball' always creeps back.


The timeline below has really helped me to put my thoughts in order. It's helped me identify some of the worst times and gives me a schedule of stories to write. Each one of the events listed below has at least 1 story and I'll make my way through each milestone (if I haven't already). For anyone who is in a similar situation, it also shows how long it took for us to receive confirmation that mum has FTD. As you can see, from the first doctors appointment until the date of diagnosis, it took 6 months (with a number of hiccups in the interim). Unfortunately, these 6 months were some of the worst in terms of decline and by the final appointment, her speech had diminished and she was limited to only a few words. Please also note we are based in the UK and we relied purely on the National Health Service (NHS) for a diagnosis. We didn't pay to go private but we were lucky enough to work alongside some fantastic consultants.

So, the natural place to start next is February 2018 (6 months after our trip to Italy). I vaguely labelled this on my timeline as 'shit got real'. This was a busy month and that 'ball' I referred to earlier was certainly present.


Mums symptoms were much worse now and she was suffering with extreme paranoia/anxiety, particularly in relation to animals. It started with mum saying 'I think we've got mice, I can hear them scuttling at night'. Of course we had no reason to doubt her initially, so Pete (mums husband) took the necessary precautions. It was quickly discovered that no mice were present, but mum couldn't shift the idea. Within a few weeks, she told me she could feel mice running over her face when she slept. I initially found this hilarious (come on, running over her face?), but then I realised she genuinely believed this and it must have been so scary for her. She often pointed at fluff on the floor and screamed, mistaking the fluff for mice droppings. No matter how much reassurance we gave her, she was still utterly convinced. Strangely, one day she had been to my house and when I was driving her back, a gigantic rat ran into the road. The rat stood directly in front of my car and stared mum dead in the eyes. After that, mum thought the rat had followed her. Are you f*cking joking me? I thought. I was trying desperately to convince mum that she didn't live with rodents, and out of nowhere a mammoth rat challenged mum to a staring competition. You just couldn't make it up.


She was also convinced she had head lice. I often asked mum to wash her hair and then I would blowdry and style it. Whilst I was busy pretending to be a hairdresser, she would often shout 'I'VE GOT DICKS!' which was embarrassing to say the least. I would always check her hair but, again, this was purely paranoia. I learnt to just go along with it, I would tell her that it's sorted now and I've got rid of them. Out of curiosity, does anyone else call head lice 'dicks' or is it just my mum? She has done for as long as I can remember.


The more serious symptoms also started to show now. She often forgot to go to work and just didn't turn up to shifts. Sometimes, she would go to work and leave 30 minutes after her 4 hour shift had started. Time was a big problem for mum, she even got confused between weeks and years.


This was a really scary time for me. It was evident there was something wrong but mum was still refusing to go to the doctors. Every time it was mentioned she would shut me down and I found myself looking for other ailments that required a GP. I finally managed to get her an appointment for her knee (she had suffered with a dodgy knee for years and I finally convinced her to get it looked at). My plan was to call the doctors in advance and ask them to do a discreet assessment. The day before her appointment, mum called her GP and cancelled. Brilliant.


February was a stressful month for another reason, too. Mum was due to turn 62 in the upcoming May and I found a letter requesting her to attend an overdue mammogram (the standard approach used to screen for breast cancer). Mum had never had one, despite an annual request from the age of 50. Surprising to me, she agreed to attend the mammogram appointment. This was a long and stressful journey which I'll talk about in my next blog (February Pt. 2), but let's just say the 'ball' had never been so big.


#FTD #FrontotemporalDementia #Dementia #Journal

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