Experiencing Dementia

Experiencing Dementia.

 

SECRETS AND LIES
Sometimes I sit here and evaluate my life living with Dementia so far and how we have dealt with it. Sometimes it’s a good outcome, sometimes not; it depends on my mood I think! There is one thing, no matter what I think about, is the Secrets and Lies that’s connected with this awful illness dementia. I think that’s why I campaign as hard as I do, because the more I learn, the more questions there are, this is what I mean.
Secret`s
When I was first told I had Dementia I was advised to “Use it or lose it” and sent on my way!! If I had just been diagnosed with Cancer or HIV would they have said the same? What were they holding back? What SECRETS did they hold about this disease? As time went on I realised that not only was there nothing in place for somebody like me aged just 50yrs old with this kind of diagnosis but nobody talked about it openly?? WHY NOT? Was that a SECRET too? All I learned about this awful disease I learned via the computer but here are something’s I had to find out as time went on.
1, sometimes when I walk into the room and see my Angels face, drawn with worry and trying to figure out the best way forward for the future, what am I suppose to say? Do I say I am sorry? Do I pretend I haven’t seen her? Do I lie to her and say everything will be ok when quite clearly its not going to be? Nobody told me this would happen!
2, Never having lied to any of my grandchildren, when they ask “Grandad, are you going to die soon?? How do I answer that one? How do I look them in the eye and say “Not to worry, I am not going anywhere “ How do I look at their wonderful innocent faces and tell them that I might not be here to see them grow up, or see them married and have children of their own? Nobody told me this would happen?
3, When my Angel holds me so tight and whispers “What am I going to do without you?” How do I answer her? How do I calm her fears and trepidation? Nobody told me this would happen!
4, The nightmares, the hallucinations, the constant pressure of always being in the wrong, getting nothing right, dates, times, remembering holidays and places I have been!! WHY DID NOBODY TELL ME THIS WOULD HAPPEN??
ALL THESE SECRETS AND MORE!!!
WHY ARE THESE THINGS NEVER DISCUSSED??
LIES
Well, where do I start??
1, It’s only an Age related disease? Err excuse me????
2, it’s contagious? Yes some people walk away from me as if I have the Bubonic plague.
3, I don’t LOOK LIKE I have dementia?? Please explain to me “What does somebody “look like “with dementia.
4, it’s no use talking to him/her as she/ he won’t understand you?? Please tell me how do you know that?? When did you pass your degree in matters of the mind?
5, Just dress them in anything, they won’t know ?? Again, how do you know this??
6, A member of my family has a “Touch “of Dementia, that’s just like saying my sister is a “Touch Pregnant!!!
7, Dementia comes on suddenly!! NO IT DOESNT!!! Its actually a Critical chain of events that lead up to the later stages, its just all about becoming aware of the signs.
8, and the biggest one of all, its all about losing YOUR MEMORY!!
NO ITS NOT!!!
It’s about losing your lifestyle skills, your ability to walk properly, to talk properly, to count money and understand the simple tasks of life which you wouldn’t normally give a second thought to. Its about putting the milk in the oven and the hot cup of coffee in the fridge!!

SECRETS AND LIES, EVERY ONE OF THEM, with a lot more besides.
My dear friends, until these secrets and lies are stopped, until the truth comes out about this awful disease and until each and every one of us stand up and shout`s that enough is enough!! We will struggle to overcome something we are in the dark about. No more should we hide in the shadows and whisper about Dementia. No more should those of us who have this disease be looked at as if we have two heads!! And no more should this disease be the Silent Enemy! Because I for one will not go quietly and will campaign long and hard until there are no more SECRETS AND LIES, Just
TRUTH AND HONESTY !!

Experiencing Dementia

Experiencing Dementia.

Last Night`s
Horror Show
The feeling of emptiness within my mind about an hour or so before going to bed was not a good sign. I sat there; quiet and unresponsive to all and whatever was going on, God only knows what was on the television, but to bed I went, 9pm as usual, accompanied with my headphones on listening to Palm FM.
I love any type of music but I kept changing radio stations as I was convinced I didn’t like anything I was listening to, and found myself becoming more agitated.  Around ten PM my “Angel” Elaine came in and we tried to settle down moments later. In what seemed “Nano” seconds to me (But actually an hour or so), the Horror Show “started.

Images of people seemingly going about their business flickered across my eyes, cars, buses, planes and trains ploughed through the ni…ghtmare with ease, taking everybody and everything with it and I found myself screaming warnings, shouting at the top of my voice and my arms flaying about windmill like! My legs ran as hard as they could so I could try and warn people of the oncoming tragedy but they just turned to lead as I strained to put one foot in front of the other.
The outcome I will not write about, but needless to say it wasn’t a happy one. In my dream I just looked on in horror and screamed as loud as I could, if I am honest with myself it’s not a sound I have ever heard before and if I did I would say it wasn’t human. I have tried to re-enact the sound but I am physically unable to. My angel held me tight, dried my tears and the beads of sweat from my face and settled me down again for the night. Within minutes it had started again!!

This time I will not recall what happened as it was very personal, but also very real. What I can say is during this night terror I actually said to myself “This must be a dream and not true, it can’t be!!” I was actually dreaming within a dream, a first for me and very worrying!!! Once again the outcome was horrendous and once again my Angel and saviour were there to help me and calm me down.
As I awoke, eventually, at break of dawn I have never been so relieved to the rays of daylight streaming through our windows. Elaine’s hand immediately stretched out looking for mine as she whispered “Are you ok Norrms? Are you getting up now? I Whisper back “yes” and gently kissed her on the cheek, she looked so tied and yet so grateful to at least get a little interrupted sleep without my agonies of the night disturbing her, for an hour at least.

Never before have a described the contents of my dreams but I do believe that we have to talk about these things because it could be your partner/loved one, relation that is going through the same as me. I hope you don’t mind me sharing a snapshot of last night, and please believe me when I say it was only a snapshot, but hopefully it will help some understand what people with DEMENTIA have to endure sometimes, even though they don’t talk about it.
Love to you all, Norrms and family xxxxxxxx

“Planting Memories ” campaign 2012

“Planting Memories ” campaign 2012.

    FOR IMMEDIATE RELEASE

 

 

PLANTING MEMORIES is a campaign reaching out to all those interested in gardening to help raise public awareness of dementia and generate funds for charities involved with finding a cure and developing new treatments.

 

The idea for Planting Memories was seeded by Norman McNamara (aka Norrms) who was diagnosed with early onset dementia four years ago aged 50. Since then Norrms has been campaigning long and hard to improve things for all those who have been touched by this devastating disease.

Norrms describes here how everyone interested in gardening can get involved in the Planting Memories campaign:

“Anyone interested in gardening can ‘plant memories’ in aid of international Dementia Awareness Day 2012 (aka D.A.D) on Saturday September 15th. All you have to do is grow some garden plants of any kind over the summer and then sell them to your friends or local community on or before DAD. The profit you make can be donated online via http://www.justgiving.com/DementiaAwarenessDay2012

It doesn’t matter if you take on the challenge as an individual, or club together with some friends or neighbours. You can sell your produce direct from your front door or take it to a fête or car boot sale. Plants are very easy to grow, you can start from seed or cheat by buying ready propagated seedlings from your local garden centre. Enjoy nurturing and watching them mature, and then pot them up ready to sell as established plants during the summer or on D.A.D day! Ideas for growing plant varieties can be found on my Planting Memories Facebook page www.facebook.com/PlantingMemories.

But there is more to this campaign than fundraising. I would like you all to try and involve (where possible) someone who has a diagnosis of dementia in the choice of plants and the growing process.”

Norrms hopes that care homes, day centres and hospitals will also get involved in the Planting Memories campaign.

Longer term, Norrms would also like to pioneer for a Dementia Memory Garden  to be established in every town. This will be part sensory garden planted with flowers and herbs and part allotment for growing fruit and vegetables. The garden will be easily accessible for people with dementia and their friends (including carers and family) to go and help out or just enjoy. During the summer friends of the Memory Garden will organise competitions and fun for all the community to take part in. The produce grown can be sold and all funds will go straight to the DAD charity of  the year. Dementia Memory Gardens in Britain and the world will grow into a wonderful living legacy to all those who have created and enjoyed these flourishing pieces of land.

In 2012 the Planting Memories campaign will be supporting The Lewy Body Society. Lewy Body disease is the second most frequent cause of neurodegenerative dementia.*

*Statement by the Lewy Body Society – Charity Registration No. 1114579

We aim to support and inform carers, sufferers and the general public about this tragic disease.  DLB is often misdiagnosed as other forms of dementia, which can lead to the condition of sufferers worsening.

Virtually unknown but not uncommon, Lewy Body disease is the second most frequent cause of neurodegenerative dementia. Accurate diagnosis is essential for successful treatment. The purpose of The Lewy Body Society is to raise awareness of this terrible disease amongst the public and the medical profession.

For more information about Lewy Body disease please visit http://lewybody.org/

 

For further information about the Planting Memories campaign on behalf of Dementia Awareness Day please contact Lyn Richards or Ian Mann @ Vermilion on 01428 608019

You can read more about Norman McNamara’s story at http://dementiaawarealliance.wordpress.com/

http://www.flickr.com/photos/number10gov/6871485616/in/photostream

(Norrms is sitting next to the Prime Minister in the far right of the picture)

Release date: 27 April 2012

 

Poems By Norrms

Poems By Norrms.

 

When Lewy Body`s

Comes to

Call

When Lewy Body`s comes to call,

He doesn’t knock your door,

He never asks politely,

If he can cross your floor,

He sneaks up right behind you,

As quiet as the night,

Then before you know it,

You are in a fight,

You’re fighting for your life,

Everything you know,

From memories that`s just happened,

To those of long ago,

It cover`s you like a blanket,

From your toes up to your brain,

From the diagnosis day,

You are not the same,

But fight is what we do,

Our Strength so very pure,

We will keep on fighting,

Until they find a cure

 

Norrms and family (Keep the faith my friends ) xxxxxxxxxxxx

 

“Planting Memories ” campaign 2012

“Planting Memories ” campaign 2012.

This is the link to our new page “Planting Memories” its been designed by my great friend Lyn Richards so people who want to join in with this years Dementia awareness day campaign Theme “Planting memories” can do, and raise much needed funds for the lewy Body`s Society. Please visit us, “LIKE US” and tell us how you will help to “PLANT A MEMORY” for this years DAD day, love, Norrms and family xxxxxxxx
https://www.facebook.com/PlantingMemories

Experiencing Dementia

Experiencing Dementia.

Sleeping (Or Not)
With
LEWY BODY`s
 
As I start to write this its 6.32am, been out of bed for a while now, been awake off and on since 4am. Elaine has taken the washing down to the laundry, done the polishing and I am on my second drink of the day. It’s quiet in our house at the moment,  a lot quieter than it was a few hours ago when screams pierced the night air and the nightmares came thick and fast.
This is just another night living with Lewy Body`s.
As soon as I closed my eyes last night the dreams came and went. Images of people’s faces, young, old, happy, distorted flashed in front of my eyes as if my dreams were being put on Fast Forward. Horrific pictures of terrible things burnt into my memory so much so I can remember every detail the day after. During the day I get flashbacks of these happenings which drag me even further into the mire of Depression.
So cruel is this disease of Dementia that it takes away my happy memories and replaces them with those I try to forget!! In my dream state, in the corner of me eye I see a shape coming towards me fast, I try to run but my legs turn to lead, whatever it is gets closer and closer until I feel myself lashing and kicking out, screaming, yet no noise emerging from my lips.
And yet, as I awake, the noise coming from my vocal chords strains at my throat and the scream reverberates around our small bedroom, bouncing off the walls. Elaine is holding me in a vice like grip, and gently begins to rock me as my body shakes and heaves up and down with breathlessness. The rest of the night is not really sleeping. I drift from dream to dream, jumping, twitching, kicking my legs and talking in my sleep yet making no sense. Elaine is by my side, she`s not really sleeping either, just lying there listening to me and making sure I am ok and survive the night terrors that plague me.
Then, as dawn breaks, there doesn’t seem any point in staying in bed any longer. So here I am, telling you my story, as I have before. When will this story ever end? I do not know, but the point is this story must be told and must be shared, because if it isnt told, how will we ever learn? Please don’t pity me, this is my lot, these are the cards I have been dealt, and every morning I wake up and sit down here on this computer is another day I will fight as hard and for as long as I can to raise awareness about this awful illness dementia. I only wear one hat, it doesn’t bother me which kind of dementia it is, Alzheimer’s, Lewy Body’s Vascular, the point is that one day we see a cure for all types of Dementia.
And I for one will not rest until that day comes, even if I could!!!!!!!!!

ASSISTED LIVING AWARD 2012 – I WON !!!

ASSISTED LIVING AWARD 2012 – I WON !!!.

Hello my friends, it gives me so much pleasure to announce that after being nominated for an award in the USA i actually won the best Alzheimers and Care “Blog” Award. Here is the link to the news and my story that won it, thank you so much to all my dear friends who voted for me and who many stayed up late into the night voting!! It is an pleasure and an honour to know each and every one of you, al our love, Norrms, Elaine and family

LINK TO AWARD

Thank you so much to all who voted xxxxxxxxxxxx
http://assistedlivingtoday.com/2012/03/announcing-the-2012-alty-blog-award-winners/

Experiencing Dementia

Experiencing Dementia.

On The Edge

At about seven o clock last night things started to get a little hazy. It’s been a long hard week because my heart failure has kicked in again and my breathing has been atrocious. I was back on the oxygen last night even before bed time so I knew with this, three nights of screaming and shouting and becoming more forgetful during the day, it wasn`t a good mix!!

As the day drew on I was becoming more agitated and loud! We were in Newton Abbot yesterday to get me a new suit and shoes for next week’s conference in London and all was well until mid afternoon. Elaine nudged me gently twice, smiled and asked me to keep my voice down. I of course couldn’t tell any difference but I knew was only helping me. I could feel a pressure building up inside my head, (Never a good sign) and it’s just like having High Blood pressure but without the dizziness.
As we arrived home things seem to settle a bit but as the night went on the only way I can explain it is a feeling of being there, but not being there?? Being “with it” and yet not understanding what was going on around me? I know I must have watched TV last night as we do every night, but I couldn’t tell you what a watched!! And so to bed.

Actually going to bed is a complete mystery to me as it is most nights and yet once there, the “NIGHT TERRORS” come thick and fast. This is such a cruel disease!! I can’t remember going to bed but I can remember every horrific detail of my night terrors, right up to the minute the train was just going to run me over and I rolled violently to one side and landed with such a heavy thump on our bedroom floor.
Elaine was out of bed like a shot, it was as if she hadn’t been to sleep and was expecting something like this to happen. I struggled so much getting my bearings and surroundings and shouted for help a good two minutes after it actually happened. One of the things that did come to light and shouldn’t surprise anyone, including me, was because of my weight we had major problems getting me off the floor. I could see the look of frustration, worry and hurt in my Angels eyes and I don’t want her to ever struggle like that again.

So tomorrow, 19th March 2012 will be a turning point in my life regarding my weight! I fight heart failure and Dementia every day of my life, I have given up smoking years ago, so why do I struggle so much with my weight?? I really don’t know, but not anymore!!! Eventually, Elaine managed to get me back into bed but it was a very long time before we both dropped off. I knew Elaine was worrying about me as I could hear her breathing in the dark and as myself, I think it was the shock that kept me awake for a while.
This disease as I have said before, is like no other, everybody who has this all have completely unique differences. Some are very similar yet so different in ways. Please, can everybody remember the saying I learned such a long time ago,

ONCE YOU HAVE MET ONE PERSON WITH DEMENTIA!!

YOU HAVE MET ONE PERSON WITH DEMENTIA!!

As for me, the falls mattress will be on order tomorrow, until then a quilt will be on the floor and all the bedroom furniture has been rearranged. Looks very mish mash but safety has to come first.

FOOTNOTE.

You may have won this round Dementia Demon, but if we have our way, it will be the last one you win!!!!!

Poems By Norrms

Poems By Norrms.

Mothers Day
Mother dear, do you remember when,
You looked after me like a clucking hen,
When you wiped my nose, and my bum,
Was there nothing that you would have done?
All through my life, you were always there,
Always loving, full of care,
As I Grew up you would always say,
Why are you, always in my way?
When in my teens, with that knowing look,
You could always read me like a book,
And as I wed, you did say,
Love and laughter every day,
If you quarrel, don’t go to sleep,
Until each other’s arms you do creep,
Then one day as we grew old,
Your story ended, all was told,
So from snotty nose and dirty bum,
Just want to say “I LOVE YOU MUM”
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx