Alzheimer’s

For all the times I’ve sat infront of a keyboard and monitor, I don’t think I’ve truly ever written something personal. I come from a caring line of people, but the way we deal with hurt or grief outwordly is to not complain but joke about it and move on, or grin and bear it till you can. Plenty of dark humour. Don’t succumb to getting wrapped up in yourself. It explains a lot about my writing style, but for once I’d like to share something intimate without detracting from the emotion with constant jokes.

When I was 6, my Grandmother was diagnosed with Alzheimer’s. I was too young to notice the signs let alone what the disease was, but apparently for the  two years before the diagnosis she’d been subtly behaving odd. Now, when you see Alzheimer’s on tv you tend to see an elderly person in a home, forgetting their own name every now and again but otherwise nothing out of the ordinary. Growing up with a relative with the condition it… wasn’t like that, really.

She was an intelligent woman from what I’ve been told, playing backgammon and chess regularly. But being too young and naive to know her as that, I didn’t really realise how this person was changing. A person with Alzheimer’s doesn’t sit about idly in a chair forgetting about conversations they just had, they start to get scared or not realise what they’re doing and operate on base instinct. As the condition progressed routine and impulse started to take over from rationality, such as her stacking objects endlessly then not remembering doing it or why.

As she got worse, she’d start to wander from the house. One example that sticks out in my mind is that she used to do the shopping for her and my Grandad on a routinely basis. One time when she walked out the house she picked up her laundry hamper/bag, walked to the local shop and just started putting everything she could in the bag. Once she got to the counter the instinctive part realised that something was meant to be handed over, so she reached into her hamper and pulled out one of her bras, placing it on the till before walking out to the baffled clerk that knew her.

It’s funny to joke about now and it makes it easier to look back on, but it’s a scary thing seeing someone be slowly lost piece by piece like that. She was aware something was wrong, but didn’t know what. It ended up that she first couldn’t travel to anywhere unfamiliar as she’d want to escape and be home. A memorable incident of this is a family holiday where in the middle of the night she became frightened and confused, so started to run around the halls of the hotel half naked with my Grandad and parents chasing after her.

The life expectancy after diagnosis is roughly seven years with Alzheimer’s, so you get to see those afflicted with it shuffle off with some sense of themselves still there. My Grandad on the other side of the family had dementia, which isn’t easy to see or live with but comes as more a slow softening of the faculties and when he died, I knew he was still there in some way. By the time I was 15, my Grandmother was still alive but not really speaking or moving that much. She could still do a little of both but she’d forgotten me and her other grandchildren’s names, though would stare with familiarity, and just liked to be sat there in a chair whilst we all talked.

When I was 17 roughly, she stopped being able to walk or use words and my Grandad started paying for round-the-clock carers with a special adjustable bed, hoist and sitting chair for their home. This is the part of her condition that affected me the most, as so much of her had been lost. It wasn’t a stage of blissful peace like some seem to suggest, (though maybe she was past the point of self-awareness) as she’d still operate on instinct and get scared by things or lash out. She couldn’t feed herself or go to the bathroom, and could only communicate through noises. The doctors gave her a year at best.

Throughout all of her condition and these latter days especially, my Dad, his siblings and Grandad were amazing. I can only hope to be at least half the people they were if faced with such a situation. Not once did my Dad shirk off going to see her, going morning and night to help my Grandad feed her, clothe her, care for her. Together they sung little dittys they’d make up, over which she’d stop fidgeting and start to smile, moving her feet along with the songs. Those were the parts that gave me hope that a part of who she was still remained, however small, and it was through this care they showed that she continued to live, far past expectations.

She should have died by the time I was 14 according to estimates. She actually died only last month, when I’m now 22. It was only through such love I believe she kept going, and though it wasn’t easy to see at times I’m glad she stayed with us this long. I can’t say how much she was aware towards the end, but if you ever sadly have to deal with someone close to you having Alzheimer’s it’s worth caring for them and easing their suffering. From my experience no matter how far they seem gone, how little appears to still be there they can always be made to smile and when they do, you know it’s all worth it.

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