Image source GR Stocks from Unsplash
I miss you
I had to dig into my memories to see you for who you were, before your mind devoured you. There were so many days filled with wine and song, our little family loved to celebrate; platters of exotic and traditional dishes were, very much, part of the ritual.
Christmas, birthdays, what-the-hell Fridays’ and hundreds of other family days, days that you enjoyed, days when your superior intellect strung lines together that made us laugh, or think out-of-the-box. You were exceptional, brilliant, even - I remember the science experiments you used to go on about over the dinner table; spinning magnets and electrolysis. Remarkable. It makes me want to cry, my memories squeeze tears as I write.
Dementia took hold of you slowly, at first you could still play a game of chess, you no longer won, though, and you’d always been unbeatable. Then, suddenly, you couldn’t remember how to set up the board or how to move the chess pieces. You would drink a cup of coffee sitting at the dinner table where we’d set up the board, and instantly ask for another - I guess that’s when I actually realised how sick you were, I’d been lying to myself for months, hoping it was just a phase.
You changed drastically, there was no resemblance to the man you once were; you became belligerent, psychotically paranoid, suspicious, deluded. Food became a weapon, one you used on us, without knowing how debilitating your demands for “more” were. My little family was broken, we became slaves to your illness, jittery remnants of our former selves, always bolting to satisfy your insatiable appetite.
Hell has many forms, my family lived through hell for three years. Average days often began at 2:00 AM when I would wake up to hear you banging on the kitchen door, demanding entrance so that you could make coffee and fetch your biscuits. I would, to no avail, try to explain that it was dark outside, nighttime and that coffee would only be served at 5:00AM.
Why was the kitchen locked, I hear you ask?
Well, one morning, before we started locking every door in the house, we woke up to hear the neighbours calling us, urgently. You had scaled a six foot wall and fallen, badly twisting your ankle. You had eaten fifteen packets of biscuits, three tins of beans, an entire carton of humus, all the pesto and devoured two, 2 L cokes. (The mess was phenomenal) You put the stove on (burning it out) while you opened the sliding doors, allowing all the animals out, and tried to “escape”, over the wall.
So, we locked the doors.
The “average” day would continue: you were fed, you would forget, you would ask for more, we couldn’t feed you constantly, so you would break a window or smash up your desk and throw bits of furniture at us, or try to “escape” so that you could go and buy food.
You left us three months ago. My life has not yet returned to normal. I haven’t cleared out your room yet (I’ve hardly opened the door).
I miss you, so much…the you that was sane and colorful. You, before your mind turned blank.
I have to add a footnote:
This tale is about my uncle, who lived with me for fifteen years.
Why didn’t we get help?
Firstly, this happened during the thick of the pandemic, when doctors and hospitals were refusing to attend to anything other than Covid-19. Even if we had found a doctor to take him to, it’s really, really difficult to get a paranoid, grown man into a car and take him there, when he’s still cognizant enough to know that he wants to resist. Getting a doctor to the house is an entirely difficult thing during the pandemic. He did end up in hospital, repeatedly, but was always injured from his escape attempts and doctors focused on fixing his physical injuries. Until the day he died, no doctor diagnosed him correctly. So, we had to live with it, or put him out on the street. (This is besides the fact that a home capable of caring for people suffering from Dementia, costs upwards of R25 000 ($1500) per month, and most placed a moratorium on new patients during the pandemic.)
Why is this horrendous account worth writing?
Most people think that Dementia is forgetfulness, that a sweet old person simply can’t remember names and places, that they can be easily managed and talked out of their delusions. Believe me it’s not the case at all, people should be aware of what this, all too common disease, can do to families and the person suffering it’s effects.