I had just bought a Mac and picked it up a few days before, took it my parents house and we were sitting around the table looking at the screen. Mum opened up safari, she wanted to check “how fast google was”, I mean it must be different on a Mac to her iPad, right?
She started to type “Logopenic Primary Progressive Aphasia” and bookmarked the google search to my favourites bar, she turned the screen back to me and said, “that’s what dad has.” Gently she said the words, but they still hit me like a steam train right in the gut – within seconds I had lost that gooey “I just bought something new” glow and came crashing back to that sticky old mucky feeling of “F**k, what hell do we do now”.
Dad had been unwell for a little while and at first, we didn’t know. It started off kind of endearing, he would forget little things here and there. He’d start a sentence and never finish it. He’d put the kettle on and flick the lid up (cause my sister hated the whistle it made) and then completely forget he had put it on at all, until one of us found the kettle with the water almost completely gone still on the stove with that weird smell metal makes when it is too hot. He often forgot what day of the week it was, and on the weekend would get up super early for work and be heading to the garage before we caught him and said “Hey dad, it’s Saturday remember?!”
We had only really begun to take notice of these moments when dad was probably three years into his decline, see early on it kind of seems normal – it creeps in slowly like a trickle, you sort of don’t notice it. But three years down the track…. things were getting worse and we were really starting to see the strain on dad. He was starting to get frustrated a lot, like he was trying to tell us something but couldn’t find the right words. My mother, my sister and I, had many thoughts on what a possible diagnosis could be, which we all tried to explore, over and over we began to search, we couldn’t understand it. Retrospectively, we all came to the same conclusion around the same time, not that we ever discussed it, in fact, looking back, I think my mum sort of got there first, but I think we could all see the writing on the wall. Within months, it was confirmed by dad’s Neurologist.
Logopenic Primary Progressive Aphasia is a variant of Alzheimer’s disease- at least that’s what the first result on mum’s google search had told me. Mum had saved the search so that I could go back in my own time and start to learn a little bit more about it… it has been 18 months since she saved that search and I still have not gone and read any more about this diagnosis that is slowly stealing my father from me. I don’t want to know what is going to happen in six months time, I’m trying hard to focus on and in the moment, each and everyone I can steal before he goes. I don’t want to know at what point I will lose him because I don’t think I could face knowing. There are somethings we are just better not knowing.
What makes dad’s diagnosis so hard, is that he has Early on-set Alzheimers as well, which means its aggressive and fast. Dad was only 57 when he was first diagnosed and at the age of 59 now, only a few months away from 60, I can honestly say, when he thought about retirement, this was never what he pictured. Dad always talked about how he would whisk mum off to Europe, and sadly that now can’t happen. Our family feels so young, I feel so young, at 26 it is strange to think about making decisions which are going to impact the rest of someone’s life.
I listen to my friends and people my age, talk about their weekends and how they have had a fight with their parents because they didn’t get to wear what they wanted when they left the house, or they came home too late, or they fought about where your life is going, or what I am going to do next, or how should I go back to university and finish off the course I have been deferring for two years…. etc…. it all seems so futile… and here I am… lost… wondering if when I go over to mum and dads for a cup of coffee, will dad remember my name? Will he recognise me? Will he be able to get up and walk today?
Almost every day, I turn my Mac on and I open Safari and those words stare at me, “Logopenic Primary Progressive Aphasia”, maybe tomorrow I will finally read the articles that come up on the screen. Maybe, I will start with just one.