DEMENTIA
The Long 24 Hours
By Norman Mc Namara, diagnosed with dementia five years ago aged just 50yrs old.

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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

 

 

NEW Leaflet will help thousands ??

Hello all,
Whilst advising and liasing with the PM, The Dept of Health ect on the Dementia challenge we were asked if there was anything we thought could be done to help early diagnosis and understanding. This is an idea Elaine came up with, then we both worked on and then put the idea to the PM, Dept of Health ect. We knew (by expierience) that after someone is first told they have Dementia there is a HUGE VOID and no follow up appointment. On top of that no information is readily availiable to give out to people in Leaflet form which includes important contacts and a guide to the next steps.
 
I am so very very pleasesed to announce that not only did they listen, but as you can see below they have agreed to pilot this in the South West and have just been given the go ahead to print, purchase and introduce the leaflets all across Devon. Now my friends, its up to you!! In the next couple of weeks i will have all the information as where you can get these, how to order ect and then  the ONUS is on you my friends to make sure these are given out at Outpatients, Hospitals, Drs surgerys and anywhere else you deem fit.
As they say, the hard work has been done, all we need to do is spread the word, and the leaflets as much as possible as the main aim is to have these rolled out all over the country. This is bit of the e mail i recieved (below) from my good friend Claire Warner who we have been working with for a while now and also a link for you to take a look at the new leaflet. I would very much appreciate ALL your INDIVIDUAL thoughts on this. Its taken nearly a year to set up and Elaine and i are very pleased with it
 
Hope to hear from you all soon, Norrms and family and what a FAB start to 2013!! First the New website and now this !!!!
 
QUOTE ”  I have now managed to secure the distribution of the dementia leaflets to GP practices, outpatient clinics etc. So after the launch today, I will put in the order with the printer and we will start to get the leaflets sent out across Devon in the next couple of weeks. Hooray!! I hope that makes Elaine smile! I look forward to hearing from you soon. Feel free to call me if you prefer
 
With all good wishesClaire
Claire Warner
Our Health Project
DirectorNHS South of England
 
 UNQUOTE “
 
The link is: http://www.ourhealth.southwest.nhs.uk/dementia-care/leaflets-and-publications/leaflet-for-people-newly-diagnosed-with-dementia.html

 

 

 

 

 

 

New Dementia/Stroke website for South UK

When you INVOLVE people with dementia!! this is what can happen !!!

Please Click on this LINK !!

http://ourhealth.southwest.nhs.uk/general-content/prime-minister-s-challenge-on-dementia-hails-launch-of-new-website-for-the-south-of-england.html

Sometimes when you ask people around the country “Are you involving people with Dementia they say YES!! when they really mean NO “but we are sending them Questionarries to fill out” which really means they are not asking them FACE TO FACE !!
I have been involved in this since day one and as i said yesterday i am so proud to be part of this on going project for the Dementia Challenge. I did post this yesterday but some had trouble getting on to the link so i am posting again. What was originally only availiable to the South west of England is now availiable to the WHOLE of the south of the UK !! Please click on links at the bottom of below for details near you, hopefully this will be rolled out UK wide soon, wish us luck, Best wishes, Norrms and family xxxxxxxx
P>S To all my friends overseas, PLEASE PLEASE COPY!!!!!

 

 

 

 

 

Hello, my name is Norrms Mc Namara and 5yrs ago at the age of just 50yrs old I was diagnosed with Dementia of the Alzheimer’s type, then, just eight months ago I was told I had been wrongly diagnosed, only to be followed with “You have Lewy Body`s Type Dementia instead!! Even though I had lost my father and wonderful Grandmother to this disease it still caused my world to come crashing down and I felt so lost and in the wilderness of depression and emptiness.

Four years ago, after throwing my toys out of the pram and screaming at the heavens WHY ME? my family sat me down and said “Listen there are two things you can do, you can either sit on your backside and just let this disease take over, or you can come out fighting and try to be the first one ever to beat this disease!

Wise Words

Four years later I have written three books on Dementia and a children’s ghost story for the little ones. We have crated DEMENTIA AWARENESS DAY which is now GLOBAL and raises awareness of this disease annually all over the world. We have created the Torbay Dementia Action Alliance and hopefully intend to make Torbay in Devon where I live the 1st dementia friendly community in the UK if not the world! We have created the first ever “Planting memories Garden at the Warberries nursing home in Torquay and will hopefully roll this out UK wide.

This new website, kindly created and designed by SugarFix Creative for FREE!! Is my platform now to speak out and be heard. I thank them, and I thank all those who have helped us get to this point.

We have done many, many other things as well and this is what has kept me so well, of this I am sure. So join us, as we come together to fight this awful disease, and please SAY HELLO

Best wishes, Norrms and family xxxxxxxxxxxxxxxxxxxx

 

THIS KID

This kid was born in the Fifties !

This kid was born to a poor family and times were very hard !

This Kid saw more domestic Violence in his upbringing than most !

This Kid was bullied at Primary school because of his poor upbringing.

This Kid was Bullied at secondary school because he could play football a little!

This kid was looking forward to taking his exams or “O” levels as they were called then but was ordered to finish school at Easter, before the exams, as the family needed the money, result ?  “No Qualifications” !

This kid drifted from job to job until one day he found himself Homeless!

This Kid was homeless for NINE years , seven of them without a roof!!

But this KID wasn’t beaten !!

This Kid sorted himself out and found the love of his life !

This kid raised children / grandchildren and great grandchildren!!

This kid got a great job, bought a house and raised a good and loving family !

Then ! this Kid got heart failure and was told he had 18 months to live AT THE MOST!!

FOUR YEARS LATER !!

This KID was told he also now had a second terminal Disease DEMENTIA !!

 

BUT GUESS WHAT ??

THIS KID STILL WASNT BEATEN !!

 

This kid, with the help, of family and friends continues to this day to raise awareness about Dementia, as well as visiting Downing street and trying to get his point over to the man at the top!!

This KID could be any KID.

It doesn’t have to end badly just because it started badly !!

And Guess what ??

This KID will STILL NOT BE BEATEN !!!

 

(When you think all is lost, just look around you and wonder in amazement what life has got to offer, where there is life, there is always hope my friends)

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