Diary: 24th April 2018

D day, except the D here stands for the one that I hate. 

Finally, almost 9 months since the first GP appointment we have a diagnosis;

Atypical Young Onset Alzheimer’s disease.

A string of words with devastating consequences. 

The “atypical” aspect wasn’t something I had thought of or had fully considered. This means the development of the disease doesn’t begin the way the majority do, with the “reduction” of the hippocampus (the part that stores memories), it can start elsewhere. Note: Biology was never my forté, so it still feels weird knowing the terminology.

We’re told that although only 5% of over 65’s diagnosed with Dementia present in this way, in Young Onset Dementia (those under 65) it is more than two thirds (!) which I wasn’t previously aware of (learn something new every day and all that) but no wonder it’s so bloody impossible to diagnose. 

I haven’t cried today. I’m not even sure why. I feel the need to cry but there’s nothing.
I guess there’s a strange sense of relief. Of the two possible expected outcomes, we’re told this was the better one. There are possible treat options for Alzheimer’s, with the goal to potentially slow it down. Nothings for certain – apart from it’s a terminal progressive disease, that’s the fact. We just need to take it step by step now and enjoy what we have while we have it. 

I did surprise Dad with an iPad today. He’s never had one before and it gave me so much joy. Despite concerns over his ability to engage with new technology, his disconnection from the world could not continue. I had to try. I set him up with a brand new Apple ID and showed him how with two clicks my (pre saved) contact card would allow him to video call me and show me what’s around him too..
Communication is becoming more and more difficult and hopefully this can provide an opportunity to show things vs putting himself under further stress and inevitably exasperating the issue.

As he grasps to hold onto his independence for as long as possible (stubborn as ever, like his daughter!), I’m going to damn well do everything I can to help him achieve that.

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