This month, our columnist Norrms McNamara gives his insight into the low points of living with dementia.

his disease of dementia is the worst of diseases, with so many twists and turns, so unpredictable, and just when you think you have seen it all or felt it all, along comes another wave of what dementia dishes out. And by this I mean?
Just lately I have not felt that well, I have been quiet, withdrawn and sullen.
I have been feeling as if I am not really here, does that sound really weird? No? Well, I can tell you it does to me. I can see and hear all that’s going on around me, but it all sounds like a distant echo and I can’t seem to catch what’s being said properly – so frustrating.

My spatial awareness is also much worse and this means I am shuffling or look as if I have had a drink when I haven’t. Is this my blood pressure? Or is it because I am too tired? I have always advocated that some use their illness as an easy excuse and as a ‘go to’ every time something’s wrong, but I have never done that. Some mornings I feel as if things just serve my fears that things are getting worse, but yet, some days I can speak, see, walk properly and be my normal self, so, as you see, there’s no rhyme nor reason to this disease for any of us with dementia. There is a very old saying in the ‘dementia world’ that states: “When you have met one person with dementia, you have met one person with dementia” and that’s why it’s so important that people understand it’s not all the same, it doesn’t play to the rules.

If you get a cold or the flu we all know the symptoms, but within dementia the symptoms are so very diverse I would be here all day explaining them all to you. The loneliness can be crippling and yet we have so many around us who love and care for us, that’s when the guilt monster comes to visit and you feel so guilty feeling like this and know you shouldn’t, and yet, try as you might to shake those feelings, you just can’t. These kind of feelings can last for days or just a few

hours, nobody ever knows, but as I wake each day knowing I have this terminal disease, it’s never that far away from my thoughts. I still hope it’s just a blip and normal service will be resumed as soon as possible as they say. But we have to carry on don’t we? Surely the easiest thing would be to give up and let nature take its course, wouldn’t it? But that’s not for me; I am a fighter and always will be, I will fight till the end, whenever that may come.