Hercules Piorot always uses this phrase in his repertiore of speech; ‘the little grey cells.’ My little grey cells are more confused lately, and refusing to fire up like they once did. Another PWD in the UK, who I have not met but have regular contact with via the internet wrote this to me recently and he explains the journey we are all on with honesty and courage.

DEMENTIA The Long 24 Hours

By Norman Mc Namara, diagnosed with dementia five years ago aged just 50yrs old.

“As I open my eyes, the horrors of last night’s Night terrors come flooding back. The screams, the shouting and awful scenes flash before my eyes at a million miles an hour. I turn over to see my Angel Elaine, half sleeping, half awake in case I am ill. I feel the tears welling up as I tell her so very quietly how sorry I am to put her through this, kiss her gently on the head and get up. Today will hopefully be a good day, WHY? That’s because I recognise my bedroom. Some days I don’t, some days I wake wondering where the hec I am!! As I walk into the front room it’s not so simple, I have to take my time and look around me to coordinate where things are. Television to the right, kitchen to the left, they call it open plan living, I call it a front room with an on suite kitchen LOL.

I have a cold drink, well; I would if I could find the juice! Some days all I seem to remember is the old kitchen from the old house and it can be a while before I get that much needed drink. The television at the moment is quite straight forward MY GOODNESS I love Sky+ I would be lost without it. I only have it on very low as I would hate to disturb from her must needed rest, but, alas, her “Norrms “radar has gone off and she is up with me, making me a hot cup of tea and fussing round me, I would be lost without her.

Breakfast time and this is something else I cannot do if it involves cooking, don’t get me wrong, I used to enjoy cooking, just not allowed anymore. Then comes the part I dread each morning, once I have been reminded to take my tablets it’s time to get ready. I can neither wash nor dress myself anymore, as I have in the past, tried to clean my teeth with a razor, put mouthwash on my head instead of shampoo and other hard to believe things, but all true. I am so frustrated as Elaine puts my shirt on and fastens the buttons!! MY GOD!! I AM ONLY 55 YEARS OLD!! WHAT KIND OF LIFE IS THIS? I often ask myself, but, the ever unflappable Elaine sees my frustration and tells me all will be ok.

During the day it’s a series of errors that you couldn’t make up. When walking I have started to walk like a crab and veer to my left most of the time, I start to talk very loud and sometimes become quite manic!! People stare, nudge, and wink and tut as they walk past, every so often I hear “Oh what a shame”, but not that often. But I don’t want their sympathy!! I don’t want to hear their hurtful callous remarks either. I just WANT MY LIFE BACK!!!!

If we eat out at lunchtime, it’s usually a sandwich as my eating habits are not what they were I am ashamed to admit, not only do I have my knife and fork in the wrong hands these days but finding my mouth first time is classed as quite an achievement!! Then its home as I become steadily worse walking and my breathing becomes more laboured. As I arrive home I have to change my shirt for the reasons I have just explained as by teatime, or Evening meal for the posh ones, loll, most of it goes down my front. By this time the net curtains as I call them are slowly being drawn across my eyes and things can become quite confused. And yet, the one thing that stays with me is the FEAR OF SLEEP, the fear of having another night of screaming, shouting and landing on my crash mat!! The fear of upsetting the only lady I have ever loved!!

Do I hate my life? NO. Do I love what I do now IE raising awareness? YES! With every breath I take. BUT? Would I change anything? YES!! I want my life back!! I would go back to work in a heartbeat! I want to see the dark rings around my Angels eyes disappear, I want to go on holiday without worrying about how I will be, I want to be able to walk into town on my own, or catch a bus, a Taxi, anything where I don’t have to have Elaine giving up all her time, as I am not allowed out on my own at any cost, any time!!

But this is my lot, this is, as they say, the hand we have been dealt, and we like to think we make the best of it. It’s not easy, and at times we just want to run away from it all, but we don’t, we face it head on, we stand and fight, not only for us but for all those others who face the same thing as we do, day in day out!! I hope this little snapshot into our daily life will help people understand that no matter what’s thrown at you, where there is life THERE IS HOPE!!

Best wishes, Norrms , Elaine and family xxxxxxxxxxxxxxxxx”