Diary: 25th April 2018

It took until this morning whilst brushing my teeth for those tears to arrive – I mean what the hell?! Brushing my teeth!? 

I have no idea why or what possible trigger set that off. It seemed to come from nowhere and continue on and off over the next few hours including at work in front of co-workers… I feel stupid. What has changed?! I knew this was coming in one form or another; it’s not shocking or unexpected.

A few people knew the appointment was yesterday and have kindly checked in to see how it went; saying he has “Young Onset Atypical Alzheimer’s” brings an interesting variety of responses but with one common theme; no one really knows what to say. What do you say to that? I’m not even sure what my response would be if someone said that to me now. “I know what you’re going through” would seem feasible and also predominantly untrue – what I’m learning is that everyone’s relationship to, experience, symptoms and understanding of Dementia is different. 

No one believed me when I said something was wrong.

It’s probably just stress” 

Maybe he just has a vitamin deficiency

When I mentioned Dementia was being explored, I even had:  “I very much doubt it’s anything like that, he’s too young”.  Words I will never forget. 

From family to Dad’s own GP, their lack of understanding delayed my fathers treatment. This perhaps is the most upsetting part of this story; had knowledge on the subject been more freely understood, we could have possibly delayed the crushing reality that (at the age of 61) my fathers ability to follow or contribute to conversations has already reduced predominately to pre-rehearsed platitudes. 
It’s taken 9 months to get here. 9 months from the first GP appointment.

Since then we’ve had:

  • Vitamin and blood tests (September)
  • Return GP appointment to confirm “everything’s fine” (October) 
  • First appointment with the Memory Clinic including an hour and half of initial testing  (December) 
  • Two follow ups with Memory clinic for 2.5 hours of neuropsychometric testing (January)
  • MRI (January) 
  • Initial diagnosis meet at Memory clinic (March), now referred to PET Scan
  • PET Scan (March)
  • Final diagnosis appointment April 24th
  • Treatment due to start May 1st

This is just too slow for a disease that progresses as the rate it does and only when the resulting diagnosis has been delivered, can potential treatment options even begin. 

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.