Maybe I will finally read the search…

I had just bought a Mac and picked it up a few days before, took it my mums 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. Start a sentence and never finish it. 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. We had only really begun to take notice of this 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. 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 conclusion around the same time, in fact 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 in the moment, each and everyone I can steal before he goes.

What makes dad’s diagnosis so hard, is that he has Early on-setas well. 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. 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 to 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 recongise 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.

 

Finding Strength through Persistence.

I was a pretty frustrating child. I was annoying, dramatic and I always longed to be someone else. I was constantly trying to outwit/manoeuvre the system, I longed to be a crafty, flaky kid, sitting in a jazz club with a beret on listing to some poem I didn’t understand and clicking at the end in unison with everyone else- I wanted to be in that world so badly, I’d have done anything to get there. My mother, bless her soul, spent so long trying to understand why. She would spend hours talking with me, trying to process what was going on in my mind, attempting to make me grow and push through this rut that I landed myself in, which probably lasted a good ten-fifteen years – I fought her every step of the way, I am lucky I never pushed her over the edge, although a couple of times, I am pretty sure I came close. I never fought with my dad quiet as much, not sure why, for some reason I didn’t clash with his as much, probably because we were so similar, I didn’t have to try as hard to make him understand me. But my poor mum, I gave her a hard time, like nails on a chalk board, I would driver her nuts.

Persistent, that is the best way I can describe her. No matter how much I yelled, screamed, cried, fought, made snarky inappropriate comments, she was persistent. She never gave up. When I had a problem, she always found the solution, even if I was totally unaware of it. She was in my corner fighting for me every step of the way, slowly as I grew, I started to notice it more and more.

We always had this joke, her and I, that she was my knight in shining armor, riding in on her horse coming to the rescue, sword in hard.

Then one day she started to get tired. Her health had started to deteriortate and she started to fade. Although my mum was still fighting for me, it became less and less at the front of the battle-line and more apparent that she was fighting from the shadows. No, not because she didn’t want me to see her, but because she was tired.

Around the time when I was 16, I was lying next to mum on the couch in the living room. She was exhausted. It was written all over her face – the smiles were still there, but the there was a tired hollowness behind her eyes that I could seen glaring at me, she needed a break. She had been fighting a losing battle, pushing herself to work after two years whilst being unwell, holding countless more years of undiagnosed issues before that in her hand- pushing forward without answers. Although we were all here to support her, my knight in shining amour was very much like superwoman she had to do it all herself – she took pride in all she did.

As she lay there on the couch, barely able to lift her head – all of a sudden, this giant, this warrior, this battle axe full of fierceness – suddenly looked so small, so tired, as wave upon wave of exhaustion, started crash over her. At no time did she ever look weak (even in that moment), just simply tired. I took her hand that day as I sat with her, and I said “you are not going back, please do not go back, I won’t let you”. I was looking at this warrior, who fought everyday to get out bed, struggled to get ready, every move of every limb looking like she was lifting hundreds of kilos, as the heaviness of exhaustion took over and I could not let her go back.

I held her hand that morning, as she made the call to work, to say she needed to retire – I sat with her for most of the day in fact. Pride, like I had never felt before, struck through me as she made that call – there were no tears, no shame – she simply said, “it’s time to look after me, I need to get better and I need answers.”

Then it came again, persistence. Except this time, she was not only fighting for her family, her husband, the underdog, or me – this time, she fought for herself as well. I had seen my mother fight for years, for everyone else, for those she loved and those she didn’t, in the countless children she taught, to ensure she not only educated, but she nurtured as well – I never had more pride than in that moment when I saw her fight for herself. It’s easy to fight for someone else, but it is very hard to say that you are worth fighting for.

I never gave up fighting with mum, I never gave up sparing with her – and I never made it easy. There were some days I am sure she wanted to pop me over the head and in a lot of situations we still don’t see eye to eye. But, every step I take, every decision I make, is because she fought – I will never stop attempting to make her proud. Her persistence is what gave me the strength to accomplish each and every milestone I have and will ever accomplish. Her persistence gave me a cause worth fighting for.