Norrms

For issues specific to caring for someone with dementia.
950 posts
Pet66 wrote:Fabulous Norms
Made me cry. I can't go to musical events at hubby's nursing home. I'm always in bits! We went to lots of musicals. The memory catches me.
Well done to you.
Thank you so much
Dementia`s Demons


The Demons they visit, night after night,
From when darkness falls, to morning`s bright light
Screaming !Tormenting ! making me tremble,
As Dementia's army starts to assemble,
Thrashing and screaming, and if i may say,
Seeing horrors i dont see, during the day,
I shiver and shake whilst in this dark place,
For their is no light, no loving, no grace,
Only deep seated fear that comes from within,
As the darkness it falls and the battle begins,
What has this tormented soul have to do?
To finally get peace and be rid of you?
Maybe one time i will sleep through the night,
Without enduring this terrible fight,
But until then i will have to endure
Dementia's Demon`s until we find a cure

CC Norrms 29th Sept 2016
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Three bad nights in a row, so tired xxxxxxxxxxx
A Long way from Home


I was talking to friend`s at home the other day, they asked a question i have been asked a thousand times but never get tired of answering, except this time, it was different, they asked

Whats it like actually living with this disease day after day ?

And out of nowhere, for the very first time, came the answer,

" I FEEL LIKE I AM SUCH A LONG WAY FROM HOME "

Within seconds i had to excuse myself to the bathroom and a flood of emotions overwhelmed me. it was as if the gravity of the situation had suddenly hit me for the first time all over again. I completely broke down and i am sure my sobs could be heard half way across the world. I felt so incredibly lonely , my mind was like a washing machine on spin as i tried to make sense of how i could feel like this with so many friends and family around me, but , i could not shake the feeling of loneliness.

Since meeting Elaine 23+ years ago we have always put our home life and children/ step children first, it has always been a place of safety, full of love and laughter, and just like anybody else, also sometimes full of tears and fears, but it has always been at the heart of everything we have done and do , and yet ?? there i sat, feeling as if i had never been this far away from home (As the song says) It is without a doubt the worst feeling in the world, but to me, at the moment, is the only way i can explain it.

Is it because all around me is becoming less familiar ?

Is it because my disease is progressing ?

Has my confidence levels dropped so much i feel so insecure in my surroundings ?

So many unanswered questions dear friends, so so many, and once the tears had stopped falling, the sobbing ended and i dried my eyes, i suddenly realised,

I JUST WANT TO GO HOME


Please share

Cc Norrms (diagnosed with dementia 8 years ago aged 50 xxxxx)
Norms
I feel so emotional for you, Elaine and my husband.( and myself)
He as you know is in a nursing home, Vascular dementia. He often says about home. But I'm not certain if our home, purchased in 1980 is what he means anymore ?
Thank-you for sharing your feelings . Sadly I haven't an answer for you.
" I FEEL LIKE I AM SUCH A LONG WAY FROM HOME "

Dear Norms - This is so eloquent, right from the heart. I often wish my hubby could "come back" - like you and so many others he is on dementia journey (vascular dementia)

Bless you Norms

Sending a wee hug to Norms & Elaine and Pet & husband

violet xxxxxx
TEARS AND FEARS

A few days ago Elaine caught me crying, it was a total shock to both of us because i really believed she had gone up to the lounge where we live in Sheltered housing. Why was i crying? for many many reasons.

I cried for my family, as i see their eyes, i see their fear,
I cried for my friends, hoping they will never ever suffer the deep rooted worries that we go through each day,

I cried for my past, just wanting to be the person i used to be that worked and provided for my family, oh how i would like to play football again,

I cried as i worried about my future, you see, i have read the book, i have seen what happens, the last page and the last line of the book that is dementia is burned into my soul,

In the depths of my depression I cried out in frustration at not knowing why i am still here, still doing so well, i know this sounds very strange to some, but the GUILT MONSTER that touches loved ones and carers also touches those with dementia, what RIGHT do i have to do so well for so long when other around me are failing fast??

But i also cry for all those who are doing so very well after 10/20 + years of living with this disease but yet are persecuted by some who dont understand

But most of all i cried for all those who are touched by this awful disease, those who are very much worse of than me, later down the line, in such torment and confusion, i cried because i dont want them to become the " Forgotten ones"

I often cry alone, my choice

I cry alone because people like myself who have this terrible disease are so very good at hiding things

This time i cried even more because Elaine had caught me crying and i saw the hurt in her eyes

I HATE THIS DISEASE

Cc Norrms Please feel free to share
Now I'm crying too!
Thank you Norm
Thank-you Norms
I hate the disease as well.
You are so eloquent in your writing. Makes me cry too.
A Snapshot of my night Living with lewy Bodys disease


A piercing scream shatters the quiet of the night,
Hands and legs THRASH about as if on Fire
LOOK OUT !! is the scream !! ITS GOING TO HIT!!
Arm`s beating off invisible invaders
Loved ones try to hold you down but with no avail,
They dodge the arms and legs with such precision (Thankfully, and frighteningly, so far )
OH GOD NO !! is the scream
PLEASE STOP !! a child is there in front of you in mortal danger,
The accident happens in all its gruesome detail
Each image burned into an already tormented mind
Tears fall and uncontrollable sobbing follows,
A feeling of helplessness envelopes all,
The mist seems to clear,
You hear a familiar voice talking calmly in your ear
WHY ME you shout between the tears, WHY ME ??
Not much rest is had by all after that,
Awaiting the dawns true light
Waiting for birdsong and the hope a new day brings
Tired eyes, aching bones

But you have a FIGHT DEEP WITHIN YOU

That says....
I WILL NEVER GIVE IN !!

And so another day starts

And you dread the night to come ...................................

Please share

Norrms
This is the news from yesterday (below) Unfortunately and sadly it comes as no surprise to many of us who comment on Facebook dementia pages, we have known this for may years, or at least we knew news like this was coming. What a lot of people dont know, or cant understand is why DEMENTIA isn't put as cause of death on the death certificate? Yes i know, before all the academics jump in and say dementia is a set of conditions that are contributory towards death, in English, most of us see it like this,

Dementia causes you to forget to eat, or drink causing UTi`s, confusion, spatial awareness that can lead to more complicated symptoms, falls, accidents ect.

Dementia causes depression, loneliness , isolation, and more which are many factors of a downward spiral.

Dementia, depending what type causes you to hallucinate, lack of sleep, start to wander and putting your self in danger and your heart under enormous stress, it causes your immune syndrome to plummet opening you up to virus`s such as pneumonia etc.

CAUSE OF DEATH IS DEMENTIA , which ever way you look at it, in the REAL world, this is what so many people are dying from, we need, Alzheimer's, Lewy Bodys, Vascular etc PUTTING on the death certificate, we need GP`s medical practitioners and coroners around the world to , as my dear friends in the USA say, GROW A PAIR !! And put the real cause of death on the certificate and please dont generalize it with just the word dementia.

(These are my own thought in my own humble opinion and are not meant to upset anybody, i just feel it needed to be said )

xxxxxxxxxxxxxxxxxxxxxxxx

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http://www.itv.com/news/2016-11-14/deme ... irst-time/
950 posts