“I think until you see Alzheimer’s first hand, it is kind of hard to conceive how brutal it really is” Seth Rogen
Over the last few years, watching my precious Dad battling with Alzheimer’s and Dementia, it has become more and more apparent that a lot of people are either completely unaware or mistaken when it comes to the reality of the disease.
The commonly held idea is that Alzheimer’s is a disease which causes a person to lose their memory. It is SO. MUCH. MORE than that. Yes, loss of memory does occur but loss of memory includes so much more than forgetting your mobile number or forgetting to pick up some milk on your way home from work. It’s losing the ability to make a cup of tea or even losing the ability to be aware that you even want a cup of tea; losing the ability to notice you’re hungry; losing the ability to recognise people who have been in your life a long time; losing conversational skills; losing interest in things that were once your happiness; losing mobility and so, so much more.
I could throw facts and statistics of Dementia & Alzheimer’s at you all day, I doubt that would make a difference. It’s just numbers and unless you are one of those numbers, those numbers don’t mean a lot. Living with Alzheimer’s is not something I can comment on however having to see somebody I love so dearly and unconditionally battle with the disease is something I can say a lot about..
I know you’ve changed because you have a horrible disease, you can’t remember much of what we did yesterday, or what you had for breakfast. You don’t know where I work or what I do at University but don’t worry, I know you’re very proud – even if you’ve lost the ability to show it as well as you used to.
We go for lunch together and you always have the same – a cheese sandwich, even though you don’t each much anymore. You tell me the same stories over and over again – but they don’t get boring, just to let you know. I know your conversational skills are almost none existent anymore but that doesn’t stop us chatting, you just sometimes need a little push with some questions to answer. I like to help you cut up your food when you’re struggling to manage, it feels like I’m doing a little bit to pay you back for all the help you’ve given me over the years as I was growing up.
You used to love bowling and playing games but you don’t seem to be interested anymore, but not to worry, we still include you and you just watch us miss all the skittles! Wherever we go you always seem to recognise someone, most of the time it isn’t the person you think it is but you don’t believe us when we tell you otherwise! You do things that don’t really make any sense, like changing your shoes multiple times throughout the day and you say some silly things too!
We can laugh and smile at the funny times but sometimes you do scare us Dad! Like when you went missing on holiday, we didn’t know where you’d gone, we couldn’t find you anywhere and we couldn’t get through to your phone. You’d gone to buy a hat over three hours ago walking off in the midday sun, you’d got lost and couldn’t remember the way back and you had become dehydrated and collapsed up a hill in the middle of nowhere! It’s a good job the waiter from the village was on his way to work or you might not have been found. You were not in a good way Daddio, you were put on ‘apartment arrest’ and now you’re not allowed out of our sight.
You spend a lot of the day looking out of the window watching the world go by, sometimes this makes me sad as I know how you would love to be able to go for a wander on your own but the disease stops you. You wouldn’t be able to find your way home and you can’t manage to walk very far anymore, you’re slow as a snail but we wait for you to catch up. Like they say in Lilo and Stitch – “Ohana means family and family means nobody gets left behind”. That’s why we still love to take you places, even if you don’t seem interested, we wouldn’t let you miss out just because of this disease because we know the real Dad would love the places we go!
It makes me happy when you listen to music, the effect music has on you is magical. You remember the lyrics to “Route 66” word for word and perform it brilliantly on the stage in Croatia. The crowd love it. You still play the drums like a pro and again, perform brilliantly on the stage in Croatia. I think they look forward to you coming back every year!
What I love the most, is that your wonderful quick wit and sense of humour is still very, very much present. A little spark of ‘my Dad’ comes back every time you joke around and answer with sarcasm and it’s lovely.
It hurts so much seeing you battle with this horrible disease Daddio, especially knowing there isn’t a lot I can do about it. If I could take it away from you, believe me, I would do so in heart beat. I sometimes get frustrated but it is the disease I am getting frustrated with, not you. I am fearful of what is to come, no doubt you are too, unimaginably. But don’t be scared Dad because mum and I will be right by your side the whole way like we have been from the start. This disease can change your brain but it cannot change your heart and if you remember one thing, remember that we love you. We love you, unconditionally, and more than anything.
Your Daddies girl, Emily x