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. 

Diary: 16th March 2018

That word. Dementia. I didn’t think it was possible to hate a word.

I hate what it is, what it does; the chaos, the pain, the fear, the confusion.

Most of all I hate what it’s taken and continues to steal from us every single day. Memories of the past and time from the future. And that’s just my selfish point of view. What it’s taken and continues to take from Dad every single day is inhumane. 

I honestly don’t know a man more proud or with more intelligence than my father. An encyclopaedic knowledge of history and the world around us, during his life he went from the Air Force to CEO of a UK Trade Association and predicted so much about how things would change around us; I still remember him talking to me about something called “Bluetooth technology” c2001 and how one day we’d be able to use it and the internet to program home devices such as our microwave, heating, or lights remotely… We recently just bought light bulbs for our flat that are turned on and off via an app or through Alexa – I had to smile that day. 

What I feel is worth mentioning is Dad is currently 61 years of age. Not even legal retirement age. And it’s taken us the best part of two years to hear that my worst fear had been realised; he has Young Onset Dementia. The Doctor’s best guess is he’s had this for 3 years now; slowly and quietly doing catastrophic and irreparable damage until no one could deny the problem any longer. 

My dad still has difficulty explaining the key moments when he knew something was wrong but mine started at least two years ago:

In that first year, there wasn’t one specific thing that stood out, it was lots of little things: slower responses, confusing things, struggling to recall a specific memory –  I remember having a conversation with someone and saying “something’s just not right”. Based on my explanation, you might think nothing of it (a lot of people did) but it was just the start. 

Then in October 2016, I took Dad for a holiday to Rome. It was his 60th birthday and we had never really had a holiday just the two of us, so it was my treat. During that week, the realisation of how regular those “little things” really were, was quickly apparent. I had already subconsciously started adopting my behaviour like I was the parent and needed to look after him. He also began to talk about family memories a lot more (the reason for which became clear later on…) and death. So much about his own morality. 

By early 2017, I was seeing signs that I look back on now as the most obvious. Communication issues (mixing up words) and repeated conversations for example; sometimes a few days apart, sometimes within 15 minutes. I was really concerned but no one else seemed to be picking up on what I was experiencing and at times, I even felt like perhaps I was being dramatic. But then in September 2017, a series of events in a single afternoon meant that what was happening, could no longer be ignored. It ended in tears and Dad locking himself in the bathroom crying.

The GP was called the next day.

More than 6 months later, here we are. He’s been given a formal diagnosis of Young Onset Dementia, although yet still waiting to hear exactly what type. Today we were on the phone and it happened again… My career was something we talked about at length. It was so important to him that I did well. We were talking about (more) hospital appointments and he said, “I know there was something else we talked about yesterday that I was supposed to ask you about.” It was an interview that I had coming up tomorrow. A small thing to others, but to me crushing. 

I recently built up the courage to watch the movie “Still Alice”. It’s hard to watch, I wont lie, but the story was obviously very close to home. Of the (many) quotes that resonated with me was when she tells her husband, “I wish I had cancer”. 

Please, don’t take this the wrong way. My family has had to fight the horrible C more than once in the last few years and we have generational history of cancer in our family, so I would never diminish the pain or fight that comes with this. 

But the education and understanding of Dementia (both within the general and scientific community) is not where it needs to be. Latest numbers reveal 800,000 people (!!) in the UK alone fighting this disease, sadly non of whom will recover. It’s a progressive disease with no cure…Gradually robbing the individual of everything they once knew about themselves and the world around them. How can this be?

My anger here is palpable.