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: 9th April 2018


They say the grieving process – and yes you are grieving! – includes a number of stages;

Acceptance, this is where I ‘think’ I’m at now… Either that or just flat out denial.

It’s been 6 weeks since that formal diagnosis of the D word. Dementia, a subject at this point I feel like I already know far too much about, has turned our world upside down. 

Since then, Dad’s had another hospital appointment. This time a PET scan where radioactive components are injected into the arm to see how the brain digests them and allows you see which areas of the brain arent working how they should be. He’d already had an MRI but it was inconclusive.

One of what feels like an endless list of slaps in the face when it comes to Young Onset Dementia, is the rigorous testing needed to confirm the underlying disease. We know it’s Dementia, but what type? I didn’t know there were at least seven (!), each with their own unique and evil trajectory. All with the same inevitable, heartbreaking outcome. Honestly, one I wish not to consider at this point but unfortunately that’s not an option; Ive been told there are legal, safety and financial aspects that we have to start dealing with now, before he no longer has the ability to make such decisions..I was given a folder (“a handbook”) on all the things that need to be sorted. Not in the least bit overwhelming, sure… 

But then, as we’ve already found, there are smaller issues that present themselves along the way, that you don’t even think of.

Modern technology, for example. As much as it brings so much joy and opportunity, for someone with Dementia it is an on-going obstacle course of confusion and unnecessary anguish. Something as simple as a mobile phone has become of topic of distress. The short term memory deficiency makes it almost impossible to remember new words and names, let alone learn new technology. As each mobile phone comes with its new applications and “toys”, it becomes increasingly difficult for Dad to understand. As luck would have it, backed by consumer nostalgia, Nokia have recently released some of their original phone lines (3310s with buttons and all!). Here’s hoping this could be a serendipitous opportunity to re-stimulate old memories and increase and extend his independence in the months and (I hope) years to come.