My father was diagnosed with Alzheimer’s disease in November of 2012. He was 60, going on 61 and I was 19.
When I was 19, my world was crazy and the last thing I wanted to worry about was my father. We hardly got along anyway, our relationship was almost non-existent.
So, I was pretty preoccupied at the time but I remember the struggle my mother went through to even get a diagnosis to begin with. If seeing multiple doctors and specialists is unpleasant, try doing it with someone who is, naturally, the most stubborn person on the planet and also in the beginning stages of Alzheimer’s.
During the time, my father was having multiple car crashes because he refused to stop driving- according to him, nothing was wrong with him and this is why the diagnosis was incredibly important- He drove people around for a living! Eeek! That was the scariest part but I assure you, no one was hurt- Thank goodness! And even better, something he did have to listen to was the law and when the RTA took his license away, relief washed over all of us.

I think it’s shocking, the profound effect ones' Alzheimer’s has. My experience is very different to my mother's experience.
When I first heard that it was a possibility my father had this disease, I realized that I knew next to nothing about it. “Isn’t it just forgetting things?” I thought to myself and I was dead wrong.
I researched as much as I could and gained insight from other's experiences which was helpful but more than anything, it terrified the living daylights out of me.
Ultimately, I was losing him. The fact that our relationship had been so non-existent and negative, it began to tug at me and I began this desperate quest to grow close to him. I also thought about him and how he must feel to be suffering with this disease. It was all the more harder for me to relate to him and sympathise with him because of the relationship I struggled to build with him.
I want to understand him in every  way possible and help him but mine is a conflicting experience. I’ve been placed in a race against time, travelling through a maze, running into brick walls and I’m desperate to finish but the timer has been set. Sometimes I feel as though I hear the ticking of the clock in my spaced out moments of despair and it feels as though the universe laughs at my desperate attempts to make peace.

So, What DOES my father’s Alzheimer’s teach me? The other night I was talking with my Mum about how our lives are wildly different compared to when my father’s diagnosis first came. We collectively starting putting together a list and it is what inspired this personal post so without further rambling, here it is.

  • You have little control.
    I know that some people with the disease fall into a new routine and sometimes my father will do that but it never stays that way. I watch my Mum constantly negotiate and compromise with my father on simple things, I’m talking every day tasks and lately the hardest task is convincing him why showers are essential.
    My father has this habit of mixing a bunch of different foods in one jar and keeping them in the fridge. He’s always liked weird foods but he’s hardly eating all of it. He likes to fill the fridge with a collection of leftovers and rotten food, insisting that he will eat it. If we try to tell him that it’s no good and throw it away, he will dive into the garbage and fish it right back out. So, I take the discreet route. I like to clean out the fridge every time the grocery shopping is done and every time that I do, I make sure to leave one compartment for his things so he doesn’t feel like he is losing anything. It works too. The key is using any control you already have to encourage regular and positive behaviour and living. Though sometimes, and the days will come, you’ll have to exercise your power to throw your hands in the air and let it go.
  • You’ll answer a ton of questions a day and develop a slight paranoia to the intentions of others.
    This still drives me crazy. Although my tolerance has grown greatly, I still can’t take too much of the same question without going completely insane. My Mum is a courageous one, she’ll explain the same thing over and over- as much as she can until she can’t anymore. It’s important to remember how crucial this is to someone with Alzheimer’s disease and another reason to keep things simple and orderly.
  • Time- You have little of it, He (thinks he) has a lot!
    My father’s sense of time has gone out the window. We’ve had to learn how to help him stay aware, especially when he wants to get to church by ten o’clock but won’t start getting ready until nine forty-five. It’s a  little funny because I view this disease as a total time wrecker which is limiting, it makes everyone else desperate but not him. He has no regard for it at all and I guess this can serve as a reminder to be in the moment and enjoy what is.
    I remember my sixth grade teacher standing at the front of my class on the first day back, ranting about the importance of time-management. Did she know I would need this for helping to manage my father’s Alzheimer’s? Most likely not.
    And it’s not just about YOU having better time-management, it’s about telling others that you need more notice for things. You can’t just up and leave with two minutes notice and neither can he. You also don’t want him fretting about where he is going for three hours before it’s time to go so you can’t rely on him to remember- duh!
    Time-management is something I’ve definitely learned to be better at, just incase sixth grade didn’t do it for me.
  • There are good days.
    I think a common misconception among our family and friends is that my father always has bad days or that he’s always in this bad state which is not so. I mean, yes, you’ll have to keep an eye on him incase he goes wandering but he has good days where he functions and acts completely normal. It’s still baffling to me and I truly relish in those moments. They are incredible reminders that he is still my father, he is still here, he has feelings, etc. It’s a reminder to have a genuine conversation or at least attempt one and be grateful for it. Sometimes, I think that when others see my father on a good day, they underestimate the weight of his disease and question whether he really needs help or understanding. Maybe they think he is getting better and although I wish that were true, it’s not. Good days are simply apart of the journey and I’ve learned to take them as they come. To me, they are little surprises that I consider momentary but exceptional gifts.And finally… because this post is getting way too long, I’ll stick with just five points.
  • You have to laugh about it.
    My attitude toward my father’s Alzheimer’s is lighthearted. I am deeply aware of the seriousness of his condition, I am emotionally wrapped up in it but I am determined to maintain a positive outlook. Sometimes my outlook seems merely a dream or an idealised experience, it’s not, it’s just the perspective I choose to have. I might even crack a couple of jokes about it, sometimes I laugh when my father does something so baffling and odd that he laughs too. At the end of the day, I’ve learned that having a laugh about it is usually better than having a cry about it. Sometimes you want to do both and that’s okay. Sometimes you feel like YOU are the one going crazy in this whole thing, my Mum tells me this all the time and we laugh about it. Laughter is the best medicine and when used appropriately, it’s a lovely coping mechanism!

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Written by Hannah Joy

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Published by Hannah Joy