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Norrms - Page 71 - Carers UK Forum


For issues specific to caring for someone with dementia.
956 posts
Behind every man as they say! So happy Elaine has got the recognition she so truly deserves !! Thank you Brenda Avadian and all at Caregivers Voice , she is so very grateful for this, if slightly embarrassed xxxxxxxxxx

http://thecaregiversvoice.com/tcv-featu ... -mcnamara/
Well done Image


Thank you my friend xxxx
Hello all, Please Share, Momentous days ahead.
This could well be the BIGGEST Dementia awareness Campaign in the UK at the Moment, please take particular notice of where it says "Tens Of THOUSANDS" of Purple Angels,INCREDIBLE !! thank you so much Ostrich Care xxxxxxxxxxxxxxx

http://www.ostrichcare.co.uk/news/purpl ... 7th-august

In fact, lets make it the biggest awareness campaign at the moment across the WORLD !! please e mail www.ostrichcare.co.uk for your posters and Purple Angel Badge !! Come on GUYS we can DO THIS !!!

Just been told that at tomorrows launch, Palm FM radio want to do an interview and ITV West country TV are bringing the camera`s along to film it as well, great coverage for a great Dementia aware LOGO xxxxxxxxxxxxx

I wrote this one day last week, but it’s been such a busy week I have only just remembered I did! How cruel, can one disease be?

As I lay there in bed, my eyes wildly scanning for somebody to be there, did I realise how ill I really was. I knew I was dying, I felt so awful I knew that the moment I closed my eyes, it would all be over, the end, no more laughter, no more family and no more Elaine.
OH MY GOD! Elaine! I tried to shout “I love you Elaine “and was horrified that nothing came out my mouth. I have long promised, that if at all possible, the last words on my lips on this earth would be “I love you” for Elaine to hear. I tried again but to no avail. Where was she? Why was I here, all alone? I felt so very very cold, freezing, how could this be in the middle of a heat wave? Maybe it was the illness that was taking my life so very swiftly. Again I shivered as if I was sat on ice. Looking around the room all was clear as day, and yet I couldn’t figure out if it was day or night. I tried to move but felt totally exhausted and unable to.

With my thoughts running wild, all I could think about was my life so far, what we, (My Family) have all done together so far, and more importantly, with so much more to do!! The scream started way below in my deepest recesses and I mustered all the strength I could, to shout those three words I wanted to shout so much!! I LOVE YOU!!!! and then, from that moment, time began to speed up, I was feeling better and I finally came to (Out of the hallucination I was having) only to find my darling ANGEL Elaine next to me trying to bring me back to reality.
I walked into the front room and sat there, head in hands and tear’s flowing, for what seemed like an age trying to make some sense of it all, and then it dawned on me. It was just another cruel trick by Lewy Bodies. It was just Lewy bodies reminding me that he can strike at anytime, anywhere, anyhow!! HOW CRUEL CAN ONE DISEASE BE TO DO THIS? I have NEVER experienced anything like this and hope I don’t again. I have no words to explain how frightened I was, and still am in fear of this happening again. I have to live with this every day now, being frightened of going to bed, or slipping into a “Catatonic Trance” this is my Sentence in life.

I wish I had some cheery last words to finish with but this time I haven’t, but I can say by sharing this I hope to try and explain in some small way the torment that people with Lewy Bodies have to go through, almost on a daily basis
Thank you to each and every one of you for your continuing support
Lots of “HUGS”

Norrms and family xxxxxxxxxxxxxxxx
(((Hugs))) Norrms, stay strong. xxx
Lewy Body`s

As you know, I have said many times that the worst thing about having Lewy Body’s Type dementia, is the KNOWING you have it; it’s like having two diseases.

Having more lucid times that not, at the moment is a big plus side but it brings with itself a raft of problems, Guilt being one of the biggest and knowing the “NONE” lucid times can happen anytime. As my day goes on towards evening time I start to fret. I worry about what is to come and what I will say and do. Does this make it worse?? I honestly don’t know? Can I stop worrying about it? Let me put it this way. If you knew, that at some point in the day, every day, that your personality was going to change, that you would keep asking to go home (Wherever home is) and every morning you wake up you can only recall certain memories of the night before (Without the aid of Alcohol) would you be worried??

Of course you would.

Sometimes, the only way of describing it, is, it’s like slipping in and out of Conciseness, its like drifting from one reality to another. As you know I often retire to bed early to listen to my headphones (Music) and during these times my mind drifts to other times of my life or what’s going on around me at the time, then, without knowing I suddenly become immersed in this and it becomes real!! I am suddenly in this dream like state, but yet not asleep, I am living, breathing, talking, crying and screaming in this reality as the “hallucination” takes over and drags me to places I would never want to be, or see.

The worst thing is the not knowing!! Being transported somewhere you don’t know, have never seen before, been before, is not only petrifying but the feeling of loneliness is immeasurable!! It’s like being part of a horror film, suddenly I am in bed, then the next minute I am somewhere I have never been before, totally alone, with the most horrendous things going on around me, and sometimes, to me. No, I don’t always remember these “Episodes” as we have come to call them thankfully, I truly believe if I did my mind wouldn’t take it, I have a hard enough time as it is.

The reality of “Sundowning” for those with Lewy Body’s Type Dementia is this”
“At certain points of the day (Never the same time) we begin to lose contact with what’s going on around us and step into a world that only we can see, only we can hear, only we can FEAR!!”

Is there any sense to this? NO!!
Is there any Rhyme or reason for it? NO!!!
Does anybody know why this happens?? NO!!
Is there a cure for this? NO!!!
Do we remember it? Only sometimes!!

But it happens (STUFF HAPPENS!!) it is what it is!!
Imagine, just for a fleeting second, if this was you?
Imagine that this is what would happen to you on a daily basis?
Imagine, as you awoke every day, lucid and completely compos mentis that this is what you had to look forward to, and yet you have to carry on every day as if nothing’s wrong?? Talking, eating, waving and telling the world all is well. It’s such a cruel disease and sometimes, as I go to bed at night I must admit to wishing for something’s I never thought I would.
“Where does the “GUILT” come into it?
Because of my medication, and how it works for me (MY GOD I WISH IT WORKED FOR ALL!!) I have seen friends, dear friends who were diagnosed the same time as me, being overtaken by this disgusting disease, and every time someone says “You look so well” the Guilt Monster appears and makes me feel so awful that sometimes, I wish I didn’t do so well, and all the time, friends of mine are succumbing to this awful disease, this is something else that nobody ever tells you about!!

So there it is, in Black and white, Lewy Body’s Type dementia and Sundowning. Please remember, some of us with this awful disease have a very bad habit of hiding thoughts like this, I chose not to!!!!!

Norrms Mc Namara Diagnosed with Dementia six years ago and STILL FIGHTING IT!!!
Changing Colours of the Seasons

I couldn't imagine living anywhere else in the world with the glorious changing colours of the seasons. Because its now Autumn, I was gazing at these wonderful views on my way to Budleigh Salterton when I started to think about how the seasons are very similar to life itself and the connection with Dementia.

Spring is like our births when the new born flowers and the rebirth of others push through the soil and are there for all to see with their fresh and young shoots growing rapidly into something quite beautiful.

Summer is all about things growing up, just as we do, and turning into adulthood whilst showing off their wonderful coats and colors, becoming mature and settled.

Autumn is as we get older and things start to change. This is also the season that reminds me of my illness the most. As the trees and landscapes change their colours so do we with this awful illness and things seem to take on a different meaning? The leaves slowly but surely decay and start to look a shadow of their former selves. But as with anything all is not lost. If you look very closely, beyond the falling leaves and into the landscape you can still see the same beauty and soul that lives on within all of us. We are still here, as are the trees and fields, still standing, even though they look a little bare,and we still need looking after and nurturing as does all living things.

Unfortunately along comes the bleakness of winter (late stages of Dementia) when nothing seems to grow anymore and the landscape seems to fall silent. This is the worst time of all, especially for the nature lovers (IE carers and loved ones, Family) who just want things to get back to normal and the fields and trees to blossom again. But as we know, they sadly cannot during winter.

I hope you have all enjoyed this little walk through the seasons with me, and even though it may seem a sad one, always remember the three seasons before winter and all it entails, the love, the memories and the laughter you have during the Spring, Summer and Autumn of you life, and even the winter!! I hope these memories will hopefully stay with you forever…

Please share

Well said Normms. Reminds me of the saying...

"If you want to see the rainbow, you must 1st put up with the rain"

http://americancomeback.com/wp-content/ ... -Quote.jpg

x x
Thank you my friend xxxxxxxxxxxxxxxx
956 posts