Norrms Blog

[malc]

nice to see memory cafe part on it,i'm trying to get the alzheimers society to visit potential members of the group face to face instead of phoning because like i said to them,when you first get diagnosed you think your life's over,so you need a swift kick to get motivated again.

[norrms]

Thank you my friends xxxxxxxxxx

[norrms]

Hiya , i was contaced and asked by a Dr of Psychology from Sheffield University earlier this week what we, here in Torbay think a Dementia friendly community is, and how we are building one here in Torbay, this was my reply which i hope you will find not only interesting but helpful, best wishes, Norrms and family
.

Even though we have to fundamentally change the way people think and the culture surrounding Dementia it doesn't have to be to complicated or bogged down with bureaucracy and risk assessment's . We need to put people on the ground who will approach these businesses and explain to them how simple it really is, this is our approach.

We enter every business armed with three documents only. One is the LOGO of the Torbay Dementia Action Alliance which we have had designed for free. The other`s are two documents, A Guide To Dementia By the Alz soc, , and What Is Dementia, written by myself. . We explain who we are and explain that all we want them to do is to make sure that them and all their staff read the documents, understand them and if there are any questions there are phone numbers to contact for any queries (Alzheimer's society Hot line and local Alz soc office) we explain that we will call back in two to three weeks, depending on the size of the business and once awareness has been raised amongst all staff they will get a badge to display in their window which states they are "Dementia Aware"

The words "Dementia Aware" is very important as we are certainly not a training consultancy firm nor profess to be so. We are not in the business of Training staff up to level 2,3or 4 in NVQ dementia, that is not their job, but when we explain that i was myself diagnosed with Dementia aged 50 and its not just an age related disease but a Degenerative disease of the brain and could quite possibly happen to anyone at any time, they are always taken aback.

Our aim in Torbay and hopefully UK wide is to create Dementia friendly communities which, in turn, will massively improve all aspects of people lives who are touched by this awful disease. More understating creates compassion and also reduces stigma. We did it thirty years ago with Cancer and more lately with the likes of HIV and heart problems, so there is no reason why we cannot do the same with dementia. We are involving the likes of Banks, supermarkets, local shops,cafes, schools, bus companies, colleges, coach companies, the holiday industry, Hotels, of which we have many here,Estate agencies, hairdressers, barber shops, Bingo halls, social clubs, pubs, Main post office, Cinema`s, theatres and everywhere where people visit during their everyday lives. This can only be done by creating alliances and volunteers willing to do this, but the biggest advantage we will ever have is to include those with early onset Dementia like myself. We can shape the future for people to come and provide better service and hopefully eventually rid this disease of the awful stigma that is attached to it.

Here in Torquay (in itself a huge place and not to be mistaken with TORBAY as this consists of Torquay, Paignton and Brixham) ) we are already on our way in creating the UK`s first ever Dementia Friendly small community as we have support from over 70% of buisnessss in the St Marychurch area of Torquay and 40% of Buisiness of the Babbacombe area of Torquay, we are hoping to completle the 100% in both areas in the coming months !! The beauty of this is there is no real time limit, but the sooner the better as far as we are concerned and we are hoping to be able a Dementia friendly commiunity very soon.

Please let me know your thoughts on this as i would appreciate all feedback
Lots of love, Norrms and family

[norrms]

Hiya, as promised last month this is the link to this months Alzheimers society`s "Living With Dementia" magazine which i was so lucky to be interviewed for. Please share this and pass on to your friends. My e mail is already very busy as people all over the Uk want to know how we are doing this here in Devon. We also had a great meeting in Bridgewater yesterday regarding the Overall South west of England Steering group for Dementia action alliances, things are really begining to happen, will post about that laters, please enjoy the read, best wishes, Norrms and family xxxxxx
http://www.scribd.com/doc/98961110/Alz- ... 2012-Hires

[norrms]

Oh Dear Sleep !

Oh dear sleep, please come my way,
Pass over me and end my day,
Tormented by my visions past,
Help me slumber, your shadow cast,
Its Lewy Body`s that I fight,
Every second with all my might,
Eyes that see, not always true,
Ears that hear songs so blue,
Laying my head upon my pillow,
O come dear sleep, like a whispering willow,
Take me to a place of hope,
So each day I can cope,
Refresh my mind for tomorrow’s day,
To face whatever comes my way

Best wishes, Norrms and family xxxxxxxx

[norrms]

Hiya, yesterday i had a meeting with the Chief exec of the Torbay Riviera Tourist board who after listening to what Elaine and i had to say about helping Torbay become Dementia friendly has agreed to send out all the Documentation we have put together to EACH and EVERY ONE of the Business's`s under their wing, which is, wait for it!! OVER ONE THOUSAND!!!!! and request that they proceed to include the documents in the training of ALL their staff!! Once done they will contact ourselves, the Torbay Dementia Action Alliance, who will call and see the managers of such business's`s and if all seems in order we will award them a "Dementia Aware Badge!!

Please make no mistake my wonderful friends how BIG this is. This will hopefully include thousands of staff now becoming aware of this awful disease and hopefully driving away the stigma attached to it. I am so very proud of the business's`s and also the Business people who have agreed to help us in this, and of course the good people of Torbay, thank you so much to all concerned, very best wishes, Norrms and family xxxxxxxxx

[norrms]

A Holiday
Cut Short
I DESPISE THIS DISEASE!! I HATE THIS DISEASE MORE THAN I HAVE EVER HATED ANYTHING IN MY LIFE!!!
THIS IS JUST ONE OF THE MANY REASONS WHY!
As we set off for sunny Bolton last Monday at 9am all was well and we were on our way. By 9-55am and just passing Bridgewater I wanted to know where we was going? Why we were going there and demanding to go home!! Such is the ugliness of Dementia!! And such is the deceitful way Lewy body`s works as I can remember most of it but I have no explanation as why I should be like that!! This was only the beginning to what has been a very traumatic five days, not only for my “Angel” Elaine, but also most of my family who are now nearly all back up North.
It has, without a doubt, been a very busy year so far but also a very rewarding one as I do believe with every bone of my body that we have come so far this year and will hopefully continue to do so, but this break was meant to be relaxing. Seeing and being with my children and grandchildren is the most wonderful feeling in the world for me as I know it is for many others, but this time was different. I felt as if I didn’t belong there. I felt like an outsider as the places and faces seemed distant and trying to join in with the simplest of conversations was so very hard. I stuttered, I stammered, and I struggled to remember what I wanted to say. Sometimes I felt as if it was my first day at school and was so nervous of saying the wrong thing, so I just went quiet and tried to keep up with what was going on around me, as you all know, this is not me.
One particular thing that stands out was when I was trying to have a conversation with Elaine and no matter how Elaine worded it, it didn’t actually make any sense to me and I just got more and more frustrated!! I was completely convinced it was Elaine making no sense at all and I was the one that was in the right!!! Thank GOD I have a very patient Angel as I became quite loud and obnoxious!! Eventually we decided last night that enough was enough, and as we said goodbye to all our family through the day, it suddenly dawned on me that my illness was getting worse. Outside of my comfort zone of Torbay ECT I am totally at a loss, even when I am in the bosom of my very own family. At times I felt so frightened I thought I was going to explode because I really couldn’t understand where I was or what I was doing there.
I really now believe that it wouldn’t have mattered if we were in Bolton or the Cotswolds! Or if we were on holiday in Cornwall or Corsica!! Everywhere we went felt unfamiliar and so surreal as if I was dreaming, or having a really bad nightmare. This, as you can probably tell, is the first time I have ever felt like this and believe me it’s not nice, not nice at all, because it throws up all sorts of complications for the future. Holidays are something we absolutely adore and even though we never leave this country, we both believe it’s the most beautiful country in the world (Pity about the weather) but what happens now?? Will the same thing happen when we go away? Also, what of my wonderful family?? Will they be prepared to travel down to Devon from all parts of the country? My home town is in Bolton and I have some of the best friends anyone could wish for up there, what happens now? but most of all, what about my wonderful loving “Angel “Elaine? We have yet MORE grandchildren on the way and if I flatly refuse to travel up there to see the newborns how will Elaine feel? I will not have anybody stay with me except Elaine as yet at this moment and cannot see that changing in the near future. My heart says you must let a carer come in and look after you! But my head and every sense I have in my body says NO!!
Apart from Hate, Despise and every other word similar, I cannot think of any other way I can describe how I feel about this awful illness. It`s not only robbing and thieving me of my faculties, my way of life and my hopes for the future but is now trying to restrict me in a circle of routines that seems like an impossible maze to get out of. If ever I needed strength, prayers and help to get out of this one, now is the time, I think my friends.
Fighting this terrible disease is what I do, and I like to think it’s what I do best, so I promise you that will not change!! This is a new challenge for me, but I am the first one to admit this might just be a BIGGIE and an uphill battle. So, what does the future hold? Well, as far as I am concerned it holds the best D.A.D day EVER!!!! It also holds (I Hope) the announcement of the very first “Dementia Friendly Community” in the UK right here in Torquay, and it also holds a long and fruitful friendships with all of you my friends for as long as humanly possible. Even though this has been hard to write, I just hope it helps, as it explaine`s what some of us might feel like with this illness and some of the battles we face on a daily basis. Some may not want to share this information which is of course, quite ok, we are very good at hiding things you know!! Still, now I am at home and in familiar surroundings I promise we will do our best to get on with the job in hand, for as long as we can.
All our love, Norrms, Elaine and family xxxxxxxxxxxxxxx

[ladybird]

Difficult to find the right words after reading what you have written. Very glad to see you are going to keep up the good fight.

You really are one heck of a strong man Norrms, long may you keep your fighting spirit.

[malc]

norrms,do you feel that you're fighting a losing battle nowadays with it,my wife has been where you are now for a while and it's heartbreaking to watch,my heart goes out to you and yours and fight as long as you can my friend,malc

[norrms]

Thank you so much my friendxxxxxxxxxxxxxxxx

[norrms]

Shadows

Shadows, dance within my mind,
Darkened shapes, so unkind,
Family and friends are all around,
Children’s laughter, smiles abound,
Feeling frightened, so alone,
Images chill me to the bone,
Images only I can see,
When will my mind be set free?
Shouting, cursing, through the night,
It’s always Lewy Body`s that I fight,
Every day as I awake,
Baked in sweat, too much to take,
My “Angel “Elaine, always there,
So full of love, full of care,
Once I was so full of life,
Now just a burden to my wife,
Hidden tears as they flow,
Banished memories from long ago,
Yet deep inside, I still ROAR,
I know one day, that we will SOAR,
Amongst the clouds and skies so blue,
Our love immeasurable, forever true,
Until that day, with all my might,
I battle on, and Fight the Fight!!

Best wishes, Norrms, created 17/07/2012 after cutting short our holiday because of this awful illness.

[norrms]

Well, what can i say !!! Care Homes Uk have just published this on their site showing everybody up and down the UK what can be achieved and how we can, together, make a huge difference to those with Dementia and also those who are touched by this awful disease. What a year this has BEEN!!!! And its still only JULY!!!!! Thank you so much Care Homes Uk and a big thank you to the Warberries Nursing Home, not forgetting the up and coming Widdecombe Care Home, Wellswood, Torquay, which will soon be hopefully the 2nd Planting Memories Garden within Torbay, of course not forgetting my great friend Lyn Richard`s who has done all the publicity work on this.
If anybody would like more information about this please conatct Norrms on norrms@gmail.com or the Planting Memories page on Facebook.
best wishes, Norrms and family xxxxxxxxx
http://www.carehome.co.uk/news/article. ... s-campaign

[norrms]

This without a doubt one of the most proudest moments of my life. Beneath you will find a list of all the shops and Business's`s that have signed up so far to the Torbay Dementia action Alliance and have been awarded Dementia Aware Badges. There are still many many businesses within Torbay who have signed up to support us and are awaiting information and badges. The three area`s mentioned below are just small communities within Torbay and even though we still have a long way to go, this has been done over the past few weeks by dedicated and willing volunteers who have met these people face to face and explained how we are trying to make a difference to those who have dementia and those loved ones and carers who work so hard dealing with this awful disease. I like to think this proves we are, and will continue to do so for as long as it takes, so we can eventually call Torbay a Dementia friendly Resort. What do youthink ? When you consider every one of these busuiness`s and THEIR STAFF have all been made aware of this awful disease, it really makes you think, Thank you to all concerned and to those i have yet to visit!! LOL
Please click on the link and share with the world!!
TOGETHER WE CAN MAKE THAT DIFFERENCE !!
Very best wishes, Norrms, Elaine and family xxxxxxxxxxx

http://www.scribd.com/doc/100687848/Dem ... e-Sign-Ups
http://www.scribd.com/doc/100687848/Dem ... e-Sign-Ups

[norrms]

My
Concrete Overcoat
Last night, as the night wore on, I knew I was slipping into my “Concrete Overcoat” as I call it, meaning Depression. Dark images came into my mind and at one time Elaine kept saying “I don’t know what you mean” or “We aren’t talking about anything like that” Eventually I made my way to bed as I always do, about an hour before my “Angel” so I can listen to my music for an hour and try to chill to keep the night terrors away. One hour later, as Elaine walked in I was still sat on the edge of my bed, head in hands and could not see a light at the end of any tunnel.
People with Dementia are excellent at hiding things and I believe that those, like me, and in later stages who know there is no cure at the moment are very susceptible to depression. I have been on anti depressants now for quite some years, but sometimes, no amount of Chemicals can work for you. The very thought of slowly losing your mind and forgetting all those close to you is without a doubt the most terrifying thing`s that can be faced. To know there is some invisible enemy, with no Physical symptoms as such, that can slowly drain your mind of memories and every day skills is almost incomprehensible, and yet this is what we face each day as we wake. If anybody ever tells you they are not worried about it, they are just putting on a brave face, believe me.
I am often asked if I am scared of Dying or I am scared of having Dementia and my answer is always honest and true “OF COURSE I AM!! I AM SCARED STIFF!! Every day I look into my beautiful wife’s eyes and thank God I can still remember who she is!!! When we go for a ride to the beach and I recognise where I am and how wonderfully scenic it is, I am sometimes reduced to tears as I have always considered myself to be so lucky living here, but what will happen when/if/ I ever forget that I do ?? And, what frightens me more than that?? I try to put myself in my “Angels” position , or my children’s and try to imagine what it would be like when their Husband/dad/Grandad turns round one day and says I Don’t Know Who You Are? As I do floods of tears run down my face as I can still remember as if it was yesterday when my own father said the very same to me just before he died of dementia.

All I can ask everybody is please, sometimes, just sometimes, when you don’t get that happy smile back at you, or that grin that makes you giggle so much, it’s nothing personal, it’s just sometimes, those of us who have this awful disease, are just as frightened for you all, as you are for us!! We are worried about how you will manage, how the future will treat you and how your life will hopefully improve after the Grieving. Yes, we do worry about things like that, even though we might not say so.
Sometimes it’s not “WHAT” we say, that shows you we love you, its “WHAT WE DONT SAY” that can also say a million words. Remember my dear friends, sometimes,
Silence is Strength

All my love, Norrms and family xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[michael parker]

Best wishes Norms,think you put it all very well.Don`t have any answers of course,all i can do is wish you both well.