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#3 But I love cheese?

It's time for diary entry number 3 now and all I can think is 'I regret not doing this sooner'. I'm trying to write retrospectively about the past 5 years of my life, and with no actual diary to refer back to, I'm struggling to recall everything in chronological order. A big tip to anyone in my situation; write about everything, even the sh*t days. I hate to break it to you, but you'll most likely have sh*tter days to come, and at that point you'll long for the memories of the first sh*t day. In hindsight, the first sh*t day probably won't seem sh*t at all. Can you tell I'm having a bit of a sh*t day today?


The only time I ever did write notes was after a trip to Italy with mum. Mum was still able bodied and had a capable mind, but the signs were definitely there. At this point, I had already explored the thought of dementia and was trying desperately to get mum a doctors appointment, but I was failing.


For as long as I can remember, mum has always told me 'if I get dementia, I'd rather not know'. I assume this is because she saw her dad (my Grandad Charlie) suffer with dementia, he died in 1995 when he was 64 years old. The cause of death on his death certificate is Alzheimers, though looking back now it was likely FTD. Back then, research was incredibly limited and people didn't even know FTD existed. As research progressed over the years, it became clear there are many forms of dementia and it's now evident that people were misdiagnosed in the past. Mum must have had a similar experience with her dad as I'm having now, so I assume she's always preferred the thought of 'not knowing'.


When I was having serious concerns about the prospect of dementia, I had no idea how to raise this with mum, or even if I should. Mum explicitly stated she does not want to know, so am I being selfish trying to get a doctors appointment? My thought was that if research has progressed, treatment may have progressed and medication could now be available. So the answer to my own question; I went down the selfish route.


So how do I get a doctors appointment? If I mentioned the word dementia, I knew she would just shut me down, so I knew I couldn't go down that route. Her symptoms were still the same as my last blog (lack of empathy, unsociable, watching copious amounts of TV etc) but now they appeared more extreme. She never went out (other than driving to work) and it was almost impossible getting her to leave the sofa. Many family members were still convinced she had depression, and although my opinion differed, it did give me an alternative solution to getting her to the doctors.


I remember the day well, it took me all week to plan what I was going to say. How do I tell my mum that I think she needs to see her GP as I suspect depression? I managed to persuade her to come for lunch with me (I don't know what it is, but mum really trusts me - I can persuade her to do most things, even when others fail). I was sat with my latte, mum had a Yorkshire Tea, and I remember the next conversation so well I can write it in transcript format:


Me: Mum, there's something playing on my mind and I really want to talk about it. It's quite difficult to say, but I'm hoping you'll listen.

Mum: Okay.

Me: I'm saying this because I love you and I'm worried about you. Your behaviour recently is concerning me, are you okay?

Mum: I'm fine.

Me: It's just you don't seem yourself, you seem very distant and you barely leave the house. I've never seen you like this before and I'm worried. Are you sure you're okay?

Mum: I'm fine.


Okay this is harder than I expected.


Me: You can always talk to me, if things are hard or if you if don't feel yourself. I know you say you're fine but I'm not sure I believe you.

Mum: I'm fine.

Me: I think you could have depression, mum. Why don't we go to the doctors? They could give you some advice, I will come with you and support you every step of the way?

Mum: No. My mum had depression and she went to the doctors and they gave her valium. One condition of taking valium is that you're not allowed to eat cheese, and I love cheese. So, no.


There we have it. Mum refused to talk about it anymore because she really loves cheese and I couldn't take that away from her. What the hell do I do now? Did I come on too strong? Did I word it wrong? I know I'm not a mental health expert but how did I get it that wrong? It was back to drawing board, and I had no idea where to start.


It was around this time that we had an upcoming trip to Italy. Mum had phoned me months back and asked if we could go away for some mum/daughter time. I was somewhat astonished, we had never been away together just the two of us before and I was amazed she wanted to leave the house! I did have my concerns though, I knew something wasn't right and I had no idea if her symptoms would impact the trip. Nevertheless, I absolutely had to go. If my suspicions were correct and mum did have dementia, who knew how quickly things would progress? Is this the last chance I've got to go abroad with mum? Could it be the first and last mum/daughter trip? Knowing what I know now, the answer is yes. I've never had the chance to go away with her again so I know I made the right decision.


Right decision? Yes.

Fun trip away? Questionable.

Did I document every bit of it? Absolutely, but it's too long a story to explain in this blog.


The whole reason why mum wouldn't go to the doctors (and I wouldn't mind, but she hated cheese for the first 56 years of her life);



#FTD #Dementia #FrontotemporalDementia #Journal

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