Neurodegenerative Diseases and me

So for a long time one of my favourite jokes to tell was;
“Alzheimer’s or Parkinson’s disease which would you rather have?”
To which you’d respond to the persons confused face and say “Parkinson’s of course, better to spill half of your vodka, than to forget where the fuck you put it!”. I was told it by a friend a few years ago, and me being at that gawky teen age of about 13/14 didn’t see anything wrong with it, it was in bad taste, but it always cracked a smile out of someone.

But now, aged 19 I can see where I was going wrong; I can start to question just how many people I may have upset without even realising I had, just with that shoddy excuse for humor.

As a child, my Granddad Leo was always a major part of my life, I was a daddies girl In every aspect of the term and this was extended to my Granddad. Only now do I realise just how lucky I was, to have had such a wonderful person in my life. And that’s even with his flaws, the chain smoking, the constant fecks, buggers and even the occasional C bomb, the fact that dad referred to him as ‘be careful, if that isn’t nailed down to the floor!’ To me, it just made him well, him.

He would drive my mum crazy, always sat in the same spot on our sofa, leaving ashtrays with lit fags in them around the house and the sniggers and laughter when mum would tell me off. She especially hated that, along with him smoking in the car. One of the things I remember the most from my childhood, was mum shouting at him on a regular basis, as he’d sit and smoke in the back of the car whilst myself and my brother were sat with him. It was always something along the lines of “my children are not bloody ashtrays Leo”, Granddad would always apologise and smirk this cheeky grin that always stretched to his soft blue eyes. But you always knew it would happen again.

He wouldn’t go anywhere without Charlie the dog, I’ve seen videos of myself aged two/three with mushed up quavers in my hands, banging these tight cheesey fists against my baby walker screaming “CHALIE CHALIE” with utter delight as Charlie would circle around me. He was Granddad’s shadow, he always was, and I like to think he always will be, now that they have each other up there. The holiday we took to the Norfolk Broads together will always remain with me, I was a chunky child with a thick full fringe and bob cut, and the photos of me in the tight bright orange life jacket sat cheekily with Granddad and Charlie are some of my favourites, I have a framed copy, with seashells we collected on that trip stuck around the frame. Our walks up the downs in Ventnor, to look at all the cows and rabbits, tiring both myself and the dog out were a big part of my routine growing up. There are so many things I did as a child with him in my life, things I know I’m incredibly lucky to have experienced. Fishing, scrumping, poaching and Wombling trips, but to name a few. All these positive wonderful memories, where he was happy and a proper person. Before Neurodegenerative diseases consumed him.

The thing I will never forget, the most comforting memory I have of my time with him was our countless midnight feasts. He’d wake up and potter down to the kitchen, to fry up some bacon or some ham; ham seemed to be his favourite, and I’d smell it wafting up the stairs. Occasionally when I’d sneak down to join him, would he send me away, but nine times out of ten he’d set up a plate for me and we’d sit munching and talking, throwing bits for Charlie to enjoy, until he’d remind me of school the next day and I’d be sent to bed with a “shhh don’t wake you’re parents”. Of course both of them knew, but they were happy I was spending quality time with my Granddad. His bedside table, always stashed full of battenberg, silver and red wrapped tea cakes and all sorts of cakes and treats, which he’d lovingly share whilst watching dodgy kids TV with me after school.

There are so many things I remember about him, but towards the end there are so many things I know he won’t have remembered about me. He’d had Alzheimer’s and dementia for the last ten years… Since I was about 9, and there are lots of things I didn’t realise but my family did. Leaving the occasional lit cigarette around the house was one thing, but many in such a short space of time begins to worry the people you love. I didn’t understand this, I didn’t see how he had begun to change, I didn’t understand why he was beginning to change or why he needed specialist help. And until last Monday, when I saw my Granddad for the last time, I didn’t understand why Alzheimer’s and Dementia were such destructive things and how much pain they actually caused. The only happiness I have been able to find today, the day my beloved Granddad died, is that he is no longer suffering. Seeing him so fragile, so small, doped up on morphine, really got to me. As I sat on the edge of his bed, holding his hand between mine, telling the shell of the Granddad I remember, just how much I love him and how I always will, I realised how painful these disorders are. He developed a rather aggressive form of cancer of the lungs, which had spread to his ribs, that on its own is devastating, but combine that with such conditions, that’s no way of life at all, especially at only 83.

There is nothing funny about a condition that destroys lives, that affects every member of a family, that changes a persons every aspect of being. My Granddad shouldn’t have needed to be spoon fed, shouldn’t have lost control of himself as a person, and without those conditions ruining his life, he wouldn’t have. I will never find that joke funny, not after seeing first hand how much Alzheimer’s changes a person. No one should have to suffer the way he did, and the way thousands of others suffer from these life changing conditions.

I know that I was very lucky to have him around whilst I grew up, and I know that he was always proud of me, I wouldn’t change the time I had with him for the world. His smell, his smile, the way it felt when he hugged you; how safe you felt with his gigantic hands and arms around you, that’s one thing that made me smile when I got to see him on Monday, his hands hadn’t changed a bit. They still dwarfed the rest of his body. I am so thankful that I got that time with him, the chance to see him, even if it was for the last time. Because I can’t be completely gutted about him passing, as I know he’s in a much better place and isn’t suffering anymore. No one shouldn’t be able to control their thought patterns, their memories or their lives.
Now I’m writing this, not as a warning, but as something to consider I guess; next time anyone decides to make a joke in bad taste.. You don’t know what people have seen, been through or watched happen to people they love and cherish. My Granddad will always be so special to me, and mean so much to me and I hope he’s up their smiling down on me, reunited with Nanny and Charlie the dog, finally settled and back in control. That’s what I choose to believe anyway. I love him, and I will never forget the years we had together- especially all the love, the laughter and that big yellow teapot.

Goodbye Granddad, I am so proud to be your Granddaughter.


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