Shrinking independence

Sometimes I sit and try to think about certain things and the one thing that always pops up and makes me so incredibly sad is trying to remember the last time I went out on my own, anywhere. Now don’t get me wrong, I love my wife more than life itself and will never be bored of being in her company; she is so loving and funny, but sometimes, just sometimes, I wish I could do the things most people do on my own. You know, take a walk for a morning newspaper, sit on a bench and read some on the way back and watch the world go by, or say to Elaine “What do you need? I will go and get that”, and not to mention the odd pint in the pub, laughing, joking, making friends.

You see when people think about dementia, they don’t think about things like this; it would never cross their minds that dementia can play such a horrid part in stopping you from living your everyday life and just doing the simple things. Over the years and for the past 10 years I have been told I have lost my road sense; if my wife or carer is not with me when I try to cross a road then all hell breaks loose as I will walk unknowingly across the road whether there’s oncoming traffic or not – just ask the bus drivers at St Marychurch where I live! As time goes by and each year passes, sadly you become used to it and it becomes a way of life, but deep down, every time you’d love to go somewhere on your own, and you can’t, it hits home.

I have become very good at hiding this, you see, people with dementia are so good at hiding things, especially when it comes to their feelings, but sometimes it hurts so much. You feel like you’re a burden, an annoyance, and I am sure others feel the same. You have to reshape your days, No! – reshape your life around this I should say – and it’s yet another thing added to the problems connected with dementia that nobody ever talks about. Did anybody ever tell you that because the person can’t go out at night because of sundowning, your friends list would shrink, the invites would stop – even the ones for during the day – because dementia has raised its ugly head? Or have they ever told you about the incontinence, bed wetting, shouting and screaming at night due to night terrors, the loss of reality, times and dates, swearing, and foul moods? How about your spouse of so many years saying they don’t recognise you? No, sadly I suspect not.

Is there a thing as too much information when it comes to dementia or any other illness? I personally think not, but I do think there’s a time and place for everything, and everything should be spoken about at the right time, in stages, as the disease progresses, as it does in other illnesses like cancer and heart problems, so why not dementia. Why is dementia STILL this TABOO subject that’s still whispered about in some corners – so very frustrating!

I do worry about this, I would be lying if I said I don’t, but I worry more about the future, of those to come who will be diagnosed with dementia. Will they still be going through the stigma we all did in this day and age? I certainly hope not.