Believe me, when you have dementia, you have the enemy within. It’s within your mind all the time, never leaves you, through the laughs, the smiles, the happy face lies the enemy called dementia, always lurking, always there, always casting its shadow no matter what you do.
It clouds every thought, every sentence, make you wonder if what you’re saying to others is actually making sense, your everyday actions, your lifestyle, is that normal to everybody else or just you? Frankly, it’s just there all the time, day and night!!
And so? You ask, how do you cope with this, the heaviness of it, the worry, the doubt, the uncertainty of it all and most of all, the sheer frustration of never knowing you are doing right of wrong?
Well, my friends, the answer isn’t an easy one but it can be answered nevertheless. It’s all about getting the right support you need, the understanding around you, of how dementia works, which admittedly is a huge thing to get your head around with so many different facets of it, but just knowing people around you understand just a little is such a great help.
I was once asked if I could give myself some advice 10 years ago, and my answer has always been the same. I would tell myself not to be so selfish and listen to loved ones about getting a carer and not be too proud to do so. Looking back, I can see how my incredible wife was, almost broken sometimes without getting that break she so deserved, that would be me “Having A Word With Myself”.
There are simple things anybody can do to help, like, always expect the unexpected, that’s a given, as they say, when it comes to those living with this disease. Also, when the disease gets to later stages and those with dementia start to do things so out of character, like swearing, getting undressed, crawling on the carpet picking at things that aren’t there or even running off at a moment’s notice, please understand that’s it’s the dementia, the Enemy Within that makes them do that.
They themselves would be horrified if they actually knew how they were acting, of course they would, wouldn’t you? And, as always, try to remember that not all dementias are the Alzheimer’s type, but there are many different types, mine is Lewy body’s type, please look it up.
Sometimes, it’s so hard to describe, but it’s like feeling a foreboding 24/7, as if something awful is going to happen, sometimes I just shout out, or sing (or try to in my case) in the most unexpected places, and one of my downfalls is saying what I think, no matter what subject and who I am with.
Now, I know, for those of you who know me well, will know I have always spoke my mind and said what I thought, but I used to think about what I said first. Maybe not so much these days, it’s like sometimes I don’t have a cut-off point? And once again, that’s dementia rearing its ugly head.
My own grandmother swore like a trooper when she had dementia and yet had never uttered such words before, but the thing is she had heard them and once the dementia valve is released, all seems fair game. Thankfully, I haven’t got to that stage as yet as I have never been a swearer as such, but I have to say it’s not something I want to happen to me, but then again, how will I know?
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