My wife was a full-time carer before I was diagnosed with dementia and now she looks after me.
Elaine saw the little signs first, I was doing some very weird and wonderful things as we say, like putting red hot tea in the fridge, emptying my wallet and ripping up notes, as well as emptying the fridge saying all had gone off, but the crux came when I went up to Lancashire to visit my mum, came home a week later and had no memory of being up there.
I was diagnosed quite quickly compared to some, within about six months and even though I had lost my father and grandmother to dementia I was utterly devastated. At the age of just 50 I thought my life was over and very soon depression and mental illness kicked in, it was all too much to take at one point but I have a very strong family who gave me two options: either sit on my backside and do nothing or get up and fight!! I chose the latter.
I got gradually worse until my consultant decided to do something nobody had ever tried before and put me on both Ebixan and Exelon and within a month I had my life back, my wife had her husband back and my grandchildren (many of them, LOL) had their grandad back. No it’s not a cure but it helps and I still have very very bad days and nights.
Then one day I walked into a card shop in Torquay and as I approached the counter I was having a “moment” as I call it, and explained to the young man behind the counter that I had dementia. What he did next shocked me to the core and changed my life forever, he LAUGHED out loud and shouted: “HEY, I have that as well!!” The whole shop laughed with him sadly.
If I had said I had got cancer would have he found that funny?? I think not, and as I turned around walked out I knew something had to change so nobody ever has to go through what I went through that day. That day the Torbay Dementia Action Alliance which later changed its name to Purple Angel was born, little did I know from such small beginnings in a little town in Devon would soon become a global concern, but it did.
I was at first diagnosed with Alzheimer’s and later told I had been misdiagnosed and I actually have Lewy body dementia, and I am convinced there are many out there that have suffered the same wrong diagnosis. Below is a short excerpt of what I go through on a nightly basis, I hope this helps and I hope it shows that with the right support AND HELP NOTHING IS IMPOSSIBLE.
There was a time I used to look forward to going to bed. It was a place of peace, tranquillity and a sanctuary after the day’s events, but no more.
These days I find myself dreading the darkness that envelopes my world each night. Time seems to speed up as the day goes on and yet, during the night, as I await the glorious dawning of the day, times goes so slow as if the night is stretching each second into what seems like an hour, a relentless never-ending yawn of blackness that seems to go on forever.
These are my nights just lately; I find myself wakening after what seems like hours of sleep, only to find an hour has passed and the beads of sweat from my nightmares are just going cold as they run down the back of my neck. I have tried everything, sleeping tablets, hot chocolate, listening to music, EVERYTHING!! Yet the nightmare that is Dementia just carries on regardless every day and night of my life!!
My “Angel “ is always there to console me, hold me and encourage me to settle down yet again to face the horrific nightmares I know will follow the closing of my eyes! It’s just so soul-destroying to see how tired Elaine looks sometimes as every day the reality of how much she has given up to look after me hits home like a thunderbolt.
Please understand this, all you wonderful carers (caregivers) that even though sometimes we may not say it enough, all of us with this horrible illness owe so much, to each and every one of you for all you do. We would not be here in many cases if it wasn’t for you, you are the ones that keep us safe and instil inside of us the willpower to go on and fight this!! But please believe me when I say that when we look at you in the deepest night with a look on our face that reminds you of a little lost boy you once found wandering around looking for his mum, that even though we look as if we have lost the will to carry on, we haven’t!! We are just having such a long night and do our best, trying not to disturb you.
Each night, I toss and turn, always trying to think of something pleasant before I close my eyes, but to no avail. The Dementia Demon comes along and distorts all my dreams and sleeping memories, he twists them into his own awful images and mixes them up so no sense is made of any of them.
So once again I wake up screaming, shouting, and not knowing what’s real and what’s not!! And once again my “Angel” is there, holding me tight, never complaining, never muttering under her breath of how tired she is, just whispering gently in my ear that all is ok, she is there, and always will be. Does the Dementia Demon not think he does enough damage during the day without disturbing the nights as well? Does he not think that I or Elaine have a breaking point? He must do! But I can tell you this, we are not at breaking point just yet, as once again we try to settle down for the night with a smile across our faces and a glimmer of hope in our eyes that all will be well until the dawn breaks and the daylight greets us like an old friend.
YOU WILL NEVER BREAK OUR SPIRIT!!
WE WILL NOT BREAK.
DEMENTIA DEMON, YOU HAVE BEEN WARNED!!!
Best wishes, Norrms and family xxxxxxxxxxx