Diary: 14th September 2020 – Magic

The last few weeks haven’t been easy. It’s taken large doses of self care and determination not to let the sadness of being unrecognisable to Dad allow life as I knew it grind to a halt. I’ve of course kept up visits and continued our lunches and chats – however factually inaccurate – just trying to enjoy the time but of course it’s tough pretending everything is “OK” when it’s not.

A friend happened to ask me the other day whether I’d put any further updates on this site since that day. I said I couldn’t manage it. He acknowledged that “it must be difficult to add anything else when it all feels so negative right now“. And he was right. I’ve always tried to find the positive (or worst case pragmatic) view but these past few weeks have been more of an uphill battle than any other time in this journey.

Following various updates to Dad’s Occupational Therapist, she agreed to redo his MMSE exam and the news was far more alarming than expected: he had dropped 4 points (from 11 to 7) in just 3.5 months. This put him straight into the “severe dementia” category and – I’m told – that this highly rapid progression of the disease is more than most people see in a year. Worse still, likely it’s the Covid restrictions that have impacted him, like so many others out there.

We’ve since had a broad selection of health check ups, making sure there wasn’t anything else exacerbating the dementia. When they came back clear, we had to acknowledge that this is just the disease. There wasn’t really anything that could be done, except to make sure he lived his life as best as was possible, during his remaining time here.

But tonight, for the first time in a long time, the tears streaming down my face are happy and grateful ones. Having come to accept Dad’s continued inability to identify me, I was not prepared. We’re in the the middle of conversation and suddenly:

My daughter’s on the phone“, he tells one of his care team, who happen to be visiting when I called.

I couldn’t believe what I was hearing. Shortly after he started called me “Darling” – his previously long-term pet name and said he was looking forward to seeing me in a few days. Then, the big one:

Speak soon, I love you lots“, he says as we say goodbye.

Cue hysterical tears as soon as I’ve put the phone down.

I cannot tell you how many months I’ve waited to hear those words, never really expecting to hear them again.

According to Alzheimer’s Society, someone in the later stages of dementia “may experience moments of lucidity (being aware of their situation) and some of their abilities may return temporarily.”

If this is all we get, I’m eternally grateful. I don’t think I’ve ever been so grateful for anything in my life. Every day you have to take time to appreciate the little things but this is more than I could have dreamed of at this stage.

I will hold onto this moment forever.

To me, this moment is everything.

This moment is magic.

Diary: 23rd April 2018

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.