Experiencing Dementia

Experiencing Dementia.

A Long Way to Go
But we are
GETTING THERE!!

I have just come back from doing two, 1 hour workshops at our local college where I spoke and answered questions on Dementia, my diagnosis , my thoughts for the future ect to two student groups who are taking “Social Care” as their curriculum.
As always, just before the end of my presentation I told them that I had, myself been diagnosed four years ago, and the following two minutes there was almost complete silence apart from very audible sharp intakes of breath!!

The questions of “HOW WHERE and WHEN” came thick and fast after and the most asked question was “What’s the difference between Alzheimer’s and Dementia? I had to explain to them all that DEMETIA is just the Umbrella term for all types of Dementia`s such as Alzheimer’s, Lewy Body`s, Frontal Lobal ect and I explained it in the way just as there are different types of Cancer, but its still cancer at the end of the day.

The most interesting part was that last question I have just mentioned (What’s the diff) was asked more by the Tutors than the Students?? Mmm, me thinks there is so much more to do yet, but please don’t let this distract from the awareness that WAS RAISED THIS MORNING. TWO SETS OF Students and TUTORS now know that it’s not an AGE RELATED disease, they went away knowing that people can still have a great quality of life with this illness and they will always remember the day Dementia came into their world, but hopefully left with a far better understanding of it.

Best wishes, Norrms and family xxxxxx

Poems By Norrms

I DONT WANT TO DIE!!

I don’t want to die; I just want to live,
I have much to do; I have so much to give,
I sit here and I think, what am I to do?
How to plan my day, how do I get through?
God I hate Dementia!! I get so angry and annoyed,
Because I know, my illness, I just can’t avoid,
Every day when I wake, it is on my mind,
Why is my life sometimes, so cruel and unkind?
I don’t want to DIE, of that I am so sure,
Please, come on you guys, will you find a cure?
Sooner rather than later, I’m sure you understand,
I have much more to do, as I walk this land

Norrms xxxxxxxx
(Just needed to get that off my chest, hope you understand)

Poems By Norrms

Poems By Norrms.

 

A POEM JUST FOR YOU

I will write a poem, private, just for you,
For a small donation,
Please donate to this link,
http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.justgiving.com%2FDementiaAwarenessDay2012&h=VAQEML7iq
Is its destination
::
I will write whatever you want,
About your good times or your sad,
Then you can keep this personal poem,
From this Bolton Lad,
::
Every penny that we make,
Of this you can be sure,
Will go straight to Lewy Body`s,
And hope we find a cure,
::
So come on guys, help me out,
So i can use my brain,
Before Dementia comes along,
And turns my sun to rain.

Just let me know what you want me to write about, i will write it and if you like it then you can please make a small donation to the link in the poem, whatever you think it`s worth. As you can see by the link every penny will go to the Lewy Body`s society just giving page

Best wishes, Norrms and family xxxxxxxxxxx

Poems By Norrms

Poems By Norrms.

My forgetter’s getting better,
But my rememberer is broke
To you that may seem funny
But, to me, that is no joke!

For when I’m “here” I’m wondering
If I really should be “there”
And, when I try to think it through,
I haven’t got a prayer!

Oft times I walk into a room,
Say “what am I here for?”
I wrack my brain, but all in vain!
A zero, is my score.

At times I put something away
Where it is safe, but, Gee!
The person it is safest from
Is, generally, me!

When shopping I may see someone,
Say “Hi” and have a chat,
Then, when the person walks away
I ask myself, “who was that?”

Yes, my forgetter’s getting better
While my rememberer is broke,
And it’s driving me plumb crazy
And that isn’t any joke.
_________________
I wish i could say this is mine but its not, but it is so very good dont you agree? please share, Norrms
Poem written by
Ron (Chippy) Wood

Experiencing Dementia

Please dont let the Forgetter be Forgotton !

If I had a £, no sorry, if I had a penny for every time I had said “Err Sorry I Forgot” in the last four years I would be a very rich man !!! If I say it once I must say it a thousand times a day!! I am sure you wonderful carer`s out there can understand what I am saying as it must drive you up the wall hearing it as well!.
“Have you done this? Err sorry I forgot. Have you put that away? Err sorry I forgot, and that’s just before brekkie!! LOL Frustrating to say the least on both sides as you can imagine! But what about when the day comes when I don’t answer back? What about when the day comes when you realise you might as well stop asking the questions because it falls on Deaf ears? What happens then?

When the day arrives when I am asked all these things but no reply comes from my mouth, or no acknowledgement comes from a raising of the eyebrows or a shrugging of shoulders, what do you do then? Do you continue to ask the questions in the hope that one day an answer will again come? Or do you stop asking the questions because you just tell yourself that I am at that stage that I mustn’t be able to understand? What would you do?

Both my “Angel “ Elaine and I have talked about this at length and in my humble opinion I want to be asked these questions until the day I shuffle off mu mortal cord!! I want to be able to hear Elaine’s voice for as long as I can. I want the comfort of knowing I have not been forgotten and the sound of her questions may spark some kind of memories within my mind even though I might have lost the ability to speak.

I believe this is so important, as there isn’t a person on this earth who can say how much people understand when they are in the later stages. Can you imagine being trapped in your own body and mind, understanding all that’s going on around you but unable to communicate because that little part of your brain that tells you how to speak or nod your head has been lost forever? Can you even begin to understand how frustrating that would be?

So my point is, even though the day may come when I, or, someone you know loses the ability to answer back or visibly acknowledge what’s going on around them, please don’t stop asking them questions or talking to them, no one can say how much I or others are able to understand. It would be an incredibly lonely world trapped inside my own mind and body without hearing the lovely voice of my loved ones talking to me and not “AT “me.

Please don’t let the
FORGETTER BE FORGOTTON !

Experiencing Dementia

Between the Devil
And
Deep Blue Sea

As I sat there this morning, head in hands, re-living every second of last night`s Night Terror`s, I am at a complete loss as what to do. You see, I have had my medication upped three times in the last four months, and yet the evil graphic night terrors still come. Some seem to last for hours, some for just a fleeting second. Are they image`s of times gone past? Or of a time still yet to come, who knows?

The problem is, where once I would wake screaming like a banshee, these days I seem to be so medicated I can`t come out of it! Now it seems as if I have to live my night terror right to the end whereas before I would wake with a jolt just before the worst bit happened!! The dreams/nightmares/night terrors or whatever you want to call them that relentlessly invade my slumber, and no matter what I try, there does seem to be no stopping them.

Sometimes I do manage to come out of them, fighting, kicking and screaming, and where once I would dread going to sleep because of this, sometimes now I find myself actually looking forward to coming out of them instead of being stuck in the void of unconsciousness until the bitter conclusion of the Night Terror!

And so it goes on, night after night, week after week. I cannot begin to tell you how it sometimes affects my day as I can have regular flashbacks during the day. Most people just automatically think as soon as they hear the words “Dementia”, they think of “Forgetfulness and Confusion”, little do they realise this awful illness has so many different threads to it. This is why I try to do my best to raise awareness and explain to people that it’s just not an age related disease and there are also so many different kinds of Dementia, Nightmares and Lewy body`s go hand in hand, along with the hallucinations. These are not so prominent in other dementia`s.

So, where do we go from here? Do I cut back on my medication (Exelon) and hope that I won’t start to decline mentally but will be able to wake up from my night terrors? Or do I just carry on the way I am going but still very worried that my night terrors will eventually spill over to the waking hours? What a choice!!

Sleeping tablets would only make things even worse! The thing is, these questions I am asking I have never seen asked, or answered in any medical books, I have never been sat down and told this and yet I have heard similar things so many times. Why does nobody explain this to you? Why doesn’t anybody give you the “Heads Up” that this might happen? Surely forewarned is forearmed without going overboard and frightening the living daylights out of anybody. Can’t somebody one day just sit those diagnosed down and explain the possibilities of what might happen?

My argument is, when you receive a box of (whatever) medication it may be and take out the paper with the instructions on it, on the back is a list of possible side effects a MILE LONG!!

WHATS THE DIFFERENCE!!!

I would love your views on this, thank you so much for reading this, hope it helps, love, Norrms, a very tired Elaine and family

Dementia Awareness Day

Dementia Awareness Day.

 

Hello all, i have just come back from the Torbay Dementia Action Allince Meeting and found this is my E mail. These wonderful pepole are willing to donate £1 from every ticket sold to the Lewy Body society and contribute to making Dementia Awareness Day the best one yet, thank you so much MAXI WEEKENDS!! Will ALL MY FRIENDS please share this on thier walls and if you want to come and see the show and make a weekend of it, it would be so cool to meet you all, Love, Norms and family xxx

Maxi WeekendsSunday 6th May 2012
Club Rainbow, Torquay (Rainbow International Hotel)
Sounds of motown with Roy G Hemmings (Ex original Drifters member)
Tickets only £6 each with £1 donated to The Lewy Body’s Society from each ticket sold
Doors open @ 8.30pm
Buy tickets online by visiting www.maximoo.net/eventlisting
Limited number of tickets available so early booking advised

Dementia Awareness Day

Night Sky Of Hope

This was how Dementia Day was created on January 3rd 2011 and the story I wrote that started it all. It’s also the reason for this year’s Logo of a Star, for all of you who haven’t read this before, please enjoy

                                        NIGHT SKY OF HOPE

Hiya, where we live in Torquay we are quite fortunate as in we live in a nice flat in an old Victorian house. Because of this we have floor to ceiling windows in our front room so the views are quite clear. At night time this especially so and last night I found myself staring at the night sky.

Its complete blackness and enormity made me feel very humble and the more I thought about it the more I thought about how we look at dementia. The darkness and blackness descends without warning, with no sound, omitting most of the brightness of the day. It creeps up on us daily and there are no warning signs, no alarm bells or “Symptoms” as such, in the early stages of the night times and before you know it, it’s completely dark!! Does this sound familiar??

 

Mmm, very familiar to me, BUT!! (And as you know there is always a BUT with me LOL) when you look into this sheer darkness what also can you see?? What I saw last night was the shiniest star I have ever seen, maybe I am noticing more these days, some say you do when you’re really ill, but through all that darkness and density was this star, shining and twinkling in the depth of blackness like I had never seen before. Against all the odds, there it was, shining a light that started millions of years ago but still living on pulsating in the night sky.

Then, as I looked around, there was another, and another, and another!!!!! My heart skipped a beat and I felt as if I was an excited child all over again, WHY??? Because in my mind all these wonderful wonderful shining stars were rays of hope!! Each and every one of them held the hope and prayers of everybody who is touched by this awful illness, every single one of them was somebody who had the hope and faith that one day a cure would be found, and this was the universes way of saying HOLD ON!! A Cure is coming and coming soon!! Every star that shines so bright is the light of belief that we all hold on to so dear.

So the next time you take a look up, and stare at the wonderment of the universe, just give thanks, that all the lights you see will be shining so much brighter in the very near future.

THE END

 

Within 24hrs of posting this story, Cher from Wiltshire (on the poster) rang me and within twenty minutes “Dementia Awareness Day was born. That was on the 3rd Jan 2011, the first D.A.D day was celebrated on the 17th Sept last year. This year’s will be on 15th Sept.

 

 

 

Dementia Awareness Day.

Experiencing Dementia

 

 

Experiencing Dementia.

The Race
Of
My Life
Imagine this, you are in a race, as the starting pistol goes off it’s a bit of a sluggish start until you seem to grow (as in Life) with confidence until eventually you get into your stride. For a short while you are watching all those around you in this race, learning and trying to understand their tactics (early years)

Then, just as you think you have everything under control along comes someone pushing and shoving you out of the way (Your teens) you don’t like this as you think you are the best at everything and know far more than anybody else. Eventually, you realise you don’t and you come to understand that in life you have to make the best of every day and continue to learn as much as you can.

And so the race settles down again and goes at quite a leisurely pace until you realise to will have to run a little faster, you have to speed up to keep up with everybody else and make sure you have enough energy to see this thing through so you’re not letting yourself down or any of those around you (Family, and children ) After a while you start to notice you are pulling away from the pack and doing quite well for yourself, you begin to puff your chest out, work a little harder at winning this race called life, only a few more laps to go (middle age).

THEN!!

“What’s this got to do with Dementia? I hear you call

Just as you turn the corner on the finishing straight (middle to old age) you hear footsteps behind you, getting closer and closer, you can feel their breath on the back of your neck. Who is this that’s getting closer and closer and trying to beat you to that glorious finishing line

As you turn to look, your worst fears are confirmed, it’s the one competitor in the race you didn’t want to see, trying to take over you and get to the winning line first, yes it’s a certain Mr Dementia, running shoes and all. You start to run faster and faster, pushing yourself every inch of the way, sometimes there is a gap between you (good days) sometimes he is right on your shoulder (Bad days) but no matter what, something deep down inside you tells you not to slow down, because if you do, you know that he will cross the finish line before you do !!

And so my friends, who wins this race we call life? Who crosses that Wonderful Glorious finishing line first, punches the air with Victory and continues on to do a Lap of Honour????

Some of us will come first and do that lap of honour, but unfortunately some of us wont, and for some of us the race IS STILL ON !!! This is one race I am in myself, this is one race that could go one way or the other, but please believe me when I say I promise this in one race I will give my all, and never give up!!

This is one race I intend to win!!!!

Always running
Norrms xxxxxxxxxx