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.
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.
The appointments been moved up; it’s tomorrow and I’m dreading it in some ways but in others, we just need to know.
They’ve said they *think* it’s FTD or Alzheimer’s due to his young age and primary issues with communication. Each (and all forms of Dementia) come with their own painful paths but our doctor even said “we hope [its Alzheimer’s]” as FTD has no treatment options and would progress much faster.. I guess we shall see what diagnosis we walk out with.
But I spoke to my Dad today and I can hear (and feel) how quickly his condition is progressing. Repeating questions, no knowledge of previous conversation, regular incorrect use of words and phrases and then the announcement; he’s just purchased himself a new alarm clock, that he has spent so much time trying to set up, to no avail. I can tell he’s upset, something so simple and that you can’t even blame on the complications of modern technology. He says the “paperwork is too small for him to read”. I don’t understand why there’s paperwork… I take a second and realise what he means to say is that the buttons, to adjust the time etc, are too small;
Let me walk you through this:
- Paperwork = provides instructions and directions on how to set up things
- Buttons (in this context) = provide a way to adjust settings and set up said alarm clock
This kind of decoding of conversation is becoming more common than not.
My very smart father, knows what he means – he’s not any less intelligent – he just doesn’t necessarily have all the tools to explain it in his previously impressive vocabulary.
This is a very sad but unfortunately – I’m coming to learn – a common fact of life for those with Dementia and one that I am slowly adjusting to.
I just try not to forget that he’s still the same – he’s still in there – something I try to remind him every day. I will remind him tomorrow, no matter what.
At long last, Dad’s “final” diagnosis appointment is confirmed for May 4th. At which point, we will hopefully understand more about the specifics of his condition and what that means for the future.
This will be almost 8 months since his first doctors appointment and close to 2.5 years that I’ve been saying and screaming that somethings wrong so.. let’s see what cards we are dealt with and we’ll have to just go from there.
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.