Holy moly, I think I've got the blogging bug. I am so overwhelmed by the response from my first diary entry that I'm already writing my next one, less than 24 hours later! I've already had views from all around the world including Australia, Canada, USA, Portugal, Spain and numerous cities/towns within the UK to name a few. Thank you all so much for your support, even if I help just 1 person it makes all my fears worthwhile.
As I said in my last post, I am going to be as honest as I can. The first piece of honesty I will share is that I'm actually really scared about being honest (ironic, huh?). My mum is at a stage now where she won't feel embarrassment, but there's still a part of me that doesn't want to embarrass her. Should I tell you the stories that don't portray her in a good light? Would she actually want that if she was capable of knowing? Same goes for my family, should I tell you about the times I have disagreed with them? Will it cause a family rift? I could certainly do without that right now. Anyway, fears aside, I have decided I will share these stories. A light bulb moment told me it's these stories that people will relate to most, the ones I don't want to tell. These stories relate to times in my life where I felt really alone, confused and like a total failure who didn't know what I was doing. If I had read a blog at the time which included pure honesty, it would have made me feel 10x better. Here's hoping I can write my words in a diplomatic fashion!
Now I've set the scene (I hope), it's time to get down to the nitty gritty. I suppose the first place to start is the very beginning, the signs I saw that led us to mum eventually receiving an FTD diagnosis. Signs are subtle at first, there are people in the world with FTD right now and you wouldn't have a clue, even they wouldn't have a clue. It's important to know that everyone is different, too. Sure there are similarities, but no one person has the exact same symptoms, some progress quicker than others, some people get an early diagnosis whilst they are fully cognitive, some people find out at a really advanced stage and quickly forget about the dreadful news they have received (this is the case with my mum).
For me, the first thing I noticed was how rubbish she was with her phone (circa 5 years ago, mum was around 58 years old). I know she was in her late 50's and technology really wasn't her thing, but she could not grasp even the most basic of things. In fact, the only thing she could grasp was Candy Crush (and in hindsight, this was another sign - she was completely addicted to playing this game, sometimes for hours on end). I must have taught her 834 times how to read and send a text message. A week would pass, and I had to tell her again. There wasn't any other obvious signs, so naturally I found this incredibly frustrating and sometimes I did snap at her. I remember saying to my husband at one point 'this just isn't normal', but at that time the typical response was 'she's just not tech savvy, give her a break!'.
A year or so later, we move onto a sign which I found incredibly difficult to fathom. I'm sure there is a diplomatic term for this and a more graceful way of putting it, but 'she turned into a right bitch' is probably the easiest way to explain (oh god, the honesty). She had a complete lack of empathy, couldn't reason with me, was incredibly honest (a bit like me at the minute!) and had an unwarranted bitchy attitude towards other people. She loved to tell me who she didn't like and why she didn't like them. I absolutely hated it, I just did not understand why she had turned so nasty. It made me struggle to like her at one point, of course she's my mum and I will always love her, but at the time I didn't enjoy her company.
Throughout all of this, she also started to become unsociable. Mum used to love being out and about, particularly at the pub! She loved nothing more than a boozy Saturday afternoon with her hubby (Pete - my lovely stepdad who I will introduce in another diary entry). She would spend some afternoons with her friends and family, and finish them off dancing to The Beatles in the living room. I found it really strange when she started to become distant, she slowly started watching copious amounts of TV and chose staying in rather than going out.
Whilst writing this and explaining the signs collectively, it makes me wonder why I didn't spot the problem sooner. All of this happened in stages though, it slowly but surely built up until I eventually knew something was wrong. I just didn't know what. There was a time when I questioned depression (and this is something that stuck around for a while, so many family members thought depression was the answer, a GP appointment and a few meds would therefore solve the problem). I researched long and hard, but in my heart of hearts, I knew it was something different.
This is when I entered the world of 'operation: get mum a doctors appointment'. This is a long journey with many stories within so I'll save this for my next diary entry. I suppose the main point I want to address is that these early stages were actually really difficult for me. In fact, this stage was one of the worst. I could see my mum subtly changing and I didn't know why. I began to dislike her for a period of time which made me overthink and question everything. It was so confusing, what had happened to my mum? It's worth noting that at this point she was still working as a cafe worker, and still held a driving license (yep, that's another story).
Writing this now makes me think only one thing; what I'd give to hear her bitching about Sally, she absolutely hated her thin lips and couldn't trust her (disclaimer - I'm not that honest. Sally is a made up name, but the story is true).
If you own a pair of lips like this (which are beautiful, may I add), my mum would not trust you, at least back then;