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  • Writer's pictureJessica Crawford

10 - Closer to a Diagnosis of Frontotemporal Dementia

I said at the start of my journey that one of the main reasons I wanted to start a blog was for some personal therapy, alongside trying to educate others about FTD. Today, I really need personal therapy. In all honesty, I'm feeling down, and stressed and I need to vent.

One of my first rules of thumb when starting my blog was 'be consistent'. I was determined to maintain regular writing, even when things got tough. So how am I performing so far? Absolutely sh*t, my last blog was 18 days ago. I do have a few questions though (and I really wish I had a blogger friend who could answer them); why do some blogs take 10 minutes to write, yet some take 10 hours? Have I started overthinking? Am I trying too hard? Is it normal to feel guilty when you have a 'dry spell'? On another note, why hasn't it stopped raining for the past 5 days? Is that the reason I've been demotivated?

Truth is, I think I have lots going on at the moment (the rain doesn't help though). If I'm going to stay true to my word and 'use this for therapy' and 'show honesty', then I should write about it. I suppose this blog is called FTD & Me, it should clarify how I'm feeling.

Firstly, I haven't seen Mum for over a week and I'm feeling bad about it. I don't know why I haven't seen her, I don't even have an excuse. In all honesty, I left my last visit thinking 'What's the point?'. She can't speak to me anymore (not even a little bit, no 'hello' or 'bye' and she's even stopped nodding yes/no now). She didn't want to draw, colour or play a game. I made her a cup of tea which she didn't drink. I ended up sitting in silence watching Loose Women with her, and even that's not the same. I was essentially watching a few middle-aged women chatting in their kitchens via webcam due to COVID. I tried to kiss her goodbye but I think she got confused and I scared her, which upset me. The only answer I can come up with when I ask 'What's the point?', is that at least I'm there. There is a possibility that she knows I'm with her and I'm looking out for her. Then again, that's just a possibility. I know I'm wrong for saying all of this, but sometimes it's just how I feel. I am seeing her again tomorrow, hopefully it will be a better day.

Then we move on to another thing bothering me at present; genetic testing. This warrants a whole blog post which I will do another day, but here's the jist; Mum has a dodgy gene called C9ORF72 and there's a 50% chance she has passed this to me. There is a test available and if the results are positive, I am getting FTD. No ifs, buts or maybes, I am getting FTD and I will likely show signs in my 50's (just for clarity, at present there is no cure). It's taken me a while to reach this decision, but I've decided I do want to be tested and I will give you my reasons another day. This new journey has now begun, a referral has been sent via my GP and I'm waiting to hear from the Genetics Counsellor. Despite me being happy with my decision to be tested, I am still anxious and it's playing on my mind. I suppose this is normal, it will change my life after all.

The next thing is by far the most difficult to talk about and the most prevalent thought in my mind at present. In January 2020, I lost my brother-in-law/best friend, Neil. He was 46 years old and it was totally unexpected. The impact of his death has been phenomenal on the whole family and I have no words which will ever justify how we feel. One day, I would like to talk about Neil and tell you why he meant so much to me. For now, I just want you to know this; Neil and his wife, Jane, showed me immense support when I found out about Mum. They have been my foundation and I often called upon them when in need. Without Neil, this journey has become so much harder and I feel lost. It's like a little part of me that kept me strong is now missing. This last week has hit me hard, I can't stop thinking about Neil and reality is really sinking in.

All in all, I'm just finding things hard at the minute. Even work is hard and the past few weeks have been a busy challenge. COVID has certainly had an impact and being cooped up inside all day isn't helping. I miss my friends, I miss my family and I really bloody miss my mum. I suppose the best way to describe it is that I've 'lost my mojo'.

Fear not, you don't need to call The Samaritans. I have previously struggled with my mental health over the years and I am certainly not afraid to talk about it. In fact, I have asked for professional help in the past and I would encourage anyone else who is struggling to do the same. Recently, however, I've learnt that being down is okay and there will be times I just need to have a good moan. Despite everything going on around me, I do feel strong and I trust my mojo, I know it'll come back.

I've loved writing about how I'm feeling currently. My blogs so far have been me playing 'catch up' which is obviously needed, but I'm looking forward to getting to a point where I can write about the present. For now though, let's go back to August 2018. This was a vital point in Mum's journey, it was the day I managed to get her to the doctor.

You all know I struggled to get Mum to the doctor. I spent many nights coming up with a speech to convince her to go, always tactfully excluding the word dementia so I didn't scare her. Some days it worked, but she would then subsequently cancel her appointment last minute. Some days, she just outright ignored me and instead declared her love for cheese. Regardless, the point is, that I had many failed attempts.

I'll never forget the final (more importantly, successful) attempt. On this day, Mum's health was getting worse and it now affected her work, so much so, she often forgot to turn up. I was at the pub one night and I got a text from Mum;

Mum: I was supposed to be at work today, I forgot again haha!

I'm not sure if it was because I'd had a few vodkas, but I didn't find the message funny and I sent a bit of a snarky response. I had serious concerns, how could she laugh about it?

Me: Mum, this is getting ridiculous. You've missed many shifts now and I'm really concerned about your health, you shouldn't be forgetting things like this. You need a doctor's appointment.

Wow, I was brave. I didn't mention dementia, but I mentioned her 'forgetfulness' and I knew Mum would put two and two together. To my surprise, I got this response;

Mum: You're right. I've booked a doctor's appointment for tomorrow morning at 10am. Can you come with me? I've just told them that I'm becoming forgetful.

Shocked monkey with it's hand over it's mouth

When I received that message, I had mixed emotions. Firstly, knowing I could soon get answers filled me with relief. Secondly, all I could think was 'Are you f*cking joking?'. What was that rubbish about cheese? The countless nights I couldn't sleep trying to conjure up some crazy plan, only to find out I only needed to send a simple text message. I was absolutely flabbergasted (such a good word).

16 hours later, I sat in the waiting room with Mum sitting next to me. Despite Mum taking the courageous step of seeing her GP, I knew she would play it down and I knew she wouldn't be completely honest. I therefore called in advance and had a brief conversation with the receptionist;

Me: My mum has an appointment with her GP today as she has some concerns over her memory. Is there any way I can provide him with further information before the appointment? I don't think Mum will be completely honest.

Receptionist: I can see she has an appointment, but she hasn't booked it with the GP, she booked it with a nurse.

Straight away, I knew Mum probably never even mentioned her memory. What had she told them?

Me: Oh, I didn't know that. I suspect Mum has some form of a neurological condition, is the nurse the best person to speak to?

Receptionist: That wasn't clarified when she booked and unfortunately she will need to see the GP in this instance. Let me see what I can do.

After a short wait, the receptionist came back and said it was sorted. Her appointment was now 10 minutes earlier (I didn't tell Mum that, I just picked her up earlier) but it was now with the GP. By pure luck, there had been a cancellation and I called at the exact right time. The receptionist asked me about my concerns (it ended up like a therapy session) and she told the GP to do a 'discreet assessment'. I was so relieved about the fact we were getting somewhere that I didn't even think about the appointment itself and how hard it would have been for Mum.

When the GP asked Mum why she had booked an appointment, she replied with 'I don't know, she wanted me to come' whilst pointing directly at me. I briefly reminded her it was due to how forgetful she had become, which in turn prompted the GP to ask further questions. I could tell he tailored all of his questions to short-term memory loss such as 'What did you have for tea last night?' or 'Did you go to work yesterday?'. I listened to Mum get every answer incorrect and it broke my heart. I could tell she was trying so hard to prove there wasn't anything wrong, but I had to correct her. I felt awful and I could see the tears in her eyes. Based on the questions the GP asked and the backstory I provided him with, this led to him booking a subsequent memory test and MRI scan, adding her to the 'priority' list. When we left, Mum was so upset. She was worried, she didn't understand why she couldn't answer the questions, she even admitted she just made up the answers.

I got back to work and cried. I didn't expect it to be that sad. I didn't prepare myself and I poorly judged the situation. I should have known this was going to be difficult for Mum, but selfishly all I thought was 'Yes, answers!'. It really took me by surprise but nonetheless, I was right. It was the beginning of us receiving a diagnosis of frontotemporal dementia.

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