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Norrms - Page 80 - Carers UK Forum

Norrms

For issues specific to caring for someone with dementia.
953 posts
I reckon you aren't a pebble, Norms, you are a whacking great rock!
WHAT A YEAR !! 12,014 MEMBERS NOW ON DEMENTIA AWARE PAGE !!
https://www.facebook.com/groups/2503252 ... 0/members/
Dear friends, to end what has been the most incredible year ever, we have just broken through the TWELVE THOUSAND MEMBERS mark on the facebook Dementia Aware page !! Please note these are not "LIKES" but MEMBERS who ask to join . Its the most wonderful feeling ever knowing you have created something that is helping so many. Yes its true to say there have been ups and downs, people have joined and left and a few heated arguments along the way, but when you are dealing with people (carer`s and Loved ones) whose emotions are at their highest and stress levels through the roof this is going to happen from time to time. This awful disease of Dementia make you feel so alone, so vulnerable and at a loss at what to do and where to turn, but this page works !! this page has helped so many and still does.
Because its an international page used by all corners of the world, one of the most INCREDIBLE thing that has come out of it is no matter where you are in the world or what time it is, there is always somebody there with a listening ear, to support, help or just be there, be it midnight in New Zealand, 6am in the USA or 3pm in the UK .I do have to say it is YOU GUYS that have made this so successful, because we only have a handful (If that, loll) of admins and all i have ever asked is no swearing or racism, and that you are all old enough and wise enough to know right from wrong, this is why it works so well and will continue to do so .
So if you know anybody who needs advice from REAL people who are going through the SAME thing as you, please direct them too this page, or if you haven't joined yet, but need that little bit of help, please Join.
Much love and tons of respect, Norrms (Founder ) xxxxxxxxxxxxxxxxxxxxxxxxxx
[img][img][/img][/img]Hiya all, here is a pic of the wonderful Steering Group" of the TDAA (Torbay Dementia Action Alliance) "i am taking the pic". By now, you may have noticed something, there is a definite lack of men in this , in fact, i am the only one !! We also have BOB who is in the media and covers all our newspaper PR but he is more like a sleeping partner LOLL,


Now, i dont mind saying, i know where my breads buttered and if you ever want something organising PROPERLY ?? Then ask a lady to do t!! EVERY TIME!! So now my secret is out!! Now you know what makes the TDAA the most successful local "STAND ALONE " Dementia alliance in History so far with over 1,000 business signed up, all local bus transport displaying Purple angel insignia. The whole council is signed up to the purple Angel and all its employees which runs into thousands, three Dementia drop in centres opened with another one opening late Jan/feb. All local Cleansing and environment staff have all had and received toolbox training from the PA. All staff at ALL 11 community hospitals are now dementia aware under the Purple Angel and the RCN "Space Training Video" and Torbay Hospital with over 6,500 staff are close to completion which will make them the 1st ACUTE Hospital in the World to become "Dementia aware!! Five of the Main Funeral homes in Torbay are now dementia aware with another 80 being planned across the country early next year, and over 50 care homes have received and read the Purple Angel Care for people with dementia booklet and answered the questionnaire, 250 Day Lewis Chemist shops signed up UK wide, EVERY Pharmacy under the South west IPL in Cornwall signed up, and so so much more !!


LADIES !! I SALUTE YOU !!!!!


I am just a mere Chairperson who chairs the meeting and listens to and okays all the exciting ideas you come up with, today was our Christmas party and very much deserved, heres to 2015 !!! xxxxxxxxxxxxxxxxxxxxxxxxxxxx

Attachments

AT THIS TIME OF YEAR

As Christmas approaches i would ask you all to remember this years Christmas message from the Purple Angel dementia awareness campaign

" PLEASE REMEMBER THOSE WHO CAN`T"

Living with this disease all year is, to say the least, an uphill struggle. But at this time of year especially, because for people like me,who have dementia, things go though your head that dont the rest of the year. I will sit and think.................

Q - Was it like this last year? the year before ? the year before that ? What was the tree like this year? is it better than last year or worse? Am i getting worse ? Until eventually the question i try not to ask my self that often, enters my mind, which is

" Will i see another Christmas ???"

As you probably know, younger people with early onset, once in decline, do decline very quickly, i myself have a very close relative who is only 60 and went downhill in a matter of months due to this awful disease. I am not complaining, far from it!! i have had probably the most eventful seven years since my diagnosis than i have ever had in my life !! , and i have met some wonderful people. When i was first diagnosed (As some of you remember as we have been friends before my diagnosis ) i lost an incredible 70% of my friends, both long term, short term and e mail friends, they all dropped away as if i had the Plague, in fact i wrote a poem about it called " I Haven't Got The Plague " (bottom of this post)
But the great thing is we have seen so much change in the last seven years, and as hard as it gets sometimes, thinking about how much things have improved, with memory cafes, drop in centres, dementia advisors dementia communities and the likes, really lifts my spirits, and should yours, as any change for the better is better than none.


So as you family arrive on Christmas day or over the holiday period, please spare a thought for us that cant remember what last year was like, or even why all these people are in the house ?? Here at the Purple Angel, as you know we live by two words, Inclusion and Engagement, and if you include and engage those with dementia in every festivity, every party game and every event you have, the smiles on their faces should tell all. As an idea, we all love our favorite films and TV programmes at Christmas, so as a present, why not make a home video of times past, places past and faces from the past, and have an afternoon of reminiscence in your , or their, very own home!! Spend an hour going through old photos with them, You could call this DADS/MUMS/ Granddads Hour etc! If not, why not record a black and white film that they will enjoy, and get the kids and family to sit around and watch it with them, not much to ask, a couple of hours ?? . I must admit the WIZARD of OZ that starts off in black and white and then goers to colour is also a huge hit with the kids as well!!


Always remembering, when they sit there, with that far away look in their eyes, they might just be worrying about the year to come, i know i do, so a quiet word, a touch of the hand, a look of comfort or a hug and a kiss could make all the difference. I hope this helps a little and helps you understand the world we live in at this time of year, very best wishes

Norrms and family xxxxxxxxxxxxxxxxxxxxx
Cc Norrms Mc Namara
Diagnosed with Dementia aged 50, just seven years ago

POEM I Haven't Got The Plague

As I walked through town today, I saw a friendly face,
But as he walked towards me, he then walked past with pace,
I'm sure that he had seen me, and saw my friendly wave,
I've only got Dementia, and not Bubonic plague…
Why do people treat me so, why are they so cruel…
I'm just the same as them, not some bumbling fool,
Some are friends I have known, all my working life,
Who used to chat and laugh, to both me and my wife…
But now most of them act, as if I don't exist…
And all the good times that we had, are just a distant mist…
I still laugh and I still cry, and still know that they're there,
Even when they ignore me, without a fleeting care…
So to those friends I have lost, I say to one and all…
I hope the dementia demon, never comes to call
The Fear of the Future ...........

FACT !!

From the moment you are diagnosed with dementia, your world changes, your life is never the same and a single, unique kind of fear enters your life, never to leave, that is the " Fear Of The Future " and all it entails.

This is something that haunts me on a daily basis, yes i may seem outwardly confident, and yes i stand in front of hundreds sometimes raising awareness seemingly not batting an eyelid and yes i do enjoy doing all of this. But at the end of each day, i sit, just like millions of others thinking about the days events, how its gone etc, but!! With the added worry of whats to come tomorrow, or the day after. None of us can predict the future, true, but when you have the spectre of a terminal illness hanging over your head, where you never know how the next few hours will be especially when it concerns the type of disease i have which is Lewy Bodies .
i can't even take my time day by day because my days are split into two because of sundowning. I am up in the morning, tired after the nights events, but hopeful and optimistic (I have to be, i couldnt get out of bed each day if i wasn't) I try as hard as i can not to think about the approaching late hours in the day and just try and make the best of the time i have when i am feeling myself as i put it, but the fear of the future, even the few hours approaching is always with me. Its like a gnawing , niggling feeling in the back of your mind, just like when you know something`s not quite right but cant put your finger on it, and as the day draws to a close, i have that feeling in my stomach as if i just know something bad is coming and the tension inside builds..


One of the most frustrating things is when people say "You hide it well "" What am i supposed to say to that ?? thank you ?? or " well, its an Art ?? i dont think so because i know if i had the choice i wouldn't be hiding anything!!! I do think some of it is down to my / peoples personality and ability to cope with things, and yet when the day is coming to a close i never know, because the nature of the illness never tells me, if i will have a good night of a bad night. Its like waiting for a silent assasin every night to turn up, but that's not the worst of it for me.


I fear for my families future more than most. I have no doubt they will cope when i have gone as we are all fighters in that respect and we all live t enjoy every bit of our lives, but my worry for them is when i start to deteriorate , act out of character, do things i would NEVER do and say things i would never say. I would be mortified if i ever did anything or said anything to upset my family, and i am sure most with this disease would. I have friends who are farther down the line tan me who have changed into a completely different person from the one i once know, but somewhere, deep inside, behind their eyes especially, i just know they are still there. Just because we have dementia and dont seem "there " sometimes doesnt mean that worry will ever go away.

June Brown AKA Dot Cotton From Eastenders lost her darling husband to Lewy bodies and she always says that he once said

"Its like having Two disease`s, having dementia, and KNOWING you have dementia"


Because when you come out of your "Dementia State" you sometimes , with Lewy bodies, remember little bits of your strange behaviour, When you remember what you have done the previous day, thats not the worst of it, thats gone, but the FEAR of what is to come is absolutely terrifying. Its knowing that you could be doing something totally absurd and YET its completely out of your control!! A perfect example is two nights ago i stood bolt upright in the bedroom and asked the Staff (I thought i was in a cafe) "Excuse ME? Do you sell coffee ?? As usual Elaine says she put me back in bed and i went back to sleep, but that's just a moments example, , out of many hours when i am like that, and the most awful thing for me is sometimes, just sometimes i remember it!!

But what of Elaine ? This angel on earth, and what my Angel has to put up with most nights, Broken sleep, disturbed nights, and me being totally different during the night compared to the person she wakes up with ? This is such a cruel disease my friends, but please remember its a two way thing, it affects both carers and people with dementia alike. if i have a fear of the future, then i am so sure many more like me, in the same position are feeling the same, thing is, the one thing about living with this awful disease is you become very good at hiding your feelings, hiding your worries and hiding your tears, so sad, but so very true. We are all in this together, each and every one of us, at some time in our lives, we will ALL know someone with dementia, its time for things to change my friends, and to change right now !! Not talk about it, not hold a meeting about the last meeting about the last meeting etc, but to step up and make sure ALL are involved in every step of the way including decision making and changing the way we and others look at this disease.

Heres to a great 2015 for ALL OF US !!

Norrms Mc Namara Diagnosed with dementia

7 years ago and STILL fighting it !!

Please share
The Fear of the Future ...........

FACT !!

From the moment you are diagnosed with dementia, your world changes, your life is never the same and a single, unique kind of fear enters your life, never to leave, that is the " Fear Of The Future " and all it entails.

This is something that haunts me on a daily basis, yes i may seem outwardly confident, and yes i stand in front of hundreds sometimes raising awareness seemingly not batting an eyelid and yes i do enjoy doing all of this. But at the end of each day, i sit, just like millions of others thinking about the days events, how its gone etc, but!! With the added worry of whats to come tomorrow, or the day after. None of us can predict the future, true, but when you have the spectre of a terminal illness hanging over your head, where you never know how the next few hours will be especially when it concerns the type of disease i have which is Lewy Bodies .
i can't even take my time day by day because my days are split into two because of sundowning. I am up in the morning, tired after the nights events, but hopeful and optimistic (I have to be, i couldnt get out of bed each day if i wasn't) I try as hard as i can not to think about the approaching late hours in the day and just try and make the best of the time i have when i am feeling myself as i put it, but the fear of the future, even the few hours approaching is always with me. Its like a gnawing , niggling feeling in the back of your mind, just like when you know something`s not quite right but cant put your finger on it, and as the day draws to a close, i have that feeling in my stomach as if i just know something bad is coming and the tension inside builds..


One of the most frustrating things is when people say "You hide it well "" What am i supposed to say to that ?? thank you ?? or " well, its an Art ?? i dont think so because i know if i had the choice i wouldn't be hiding anything!!! I do think some of it is down to my / peoples personality and ability to cope with things, and yet when the day is coming to a close i never know, because the nature of the illness never tells me, if i will have a good night of a bad night. Its like waiting for a silent assasin every night to turn up, but that's not the worst of it for me.


I fear for my families future more than most. I have no doubt they will cope when i have gone as we are all fighters in that respect and we all live t enjoy every bit of our lives, but my worry for them is when i start to deteriorate , act out of character, do things i would NEVER do and say things i would never say. I would be mortified if i ever did anything or said anything to upset my family, and i am sure most with this disease would. I have friends who are farther down the line tan me who have changed into a completely different person from the one i once know, but somewhere, deep inside, behind their eyes especially, i just know they are still there. Just because we have dementia and dont seem "there " sometimes doesnt mean that worry will ever go away.

June Brown AKA Dot Cotton From Eastenders lost her darling husband to Lewy bodies and she always says that he once said

"Its like having Two disease`s, having dementia, and KNOWING you have dementia"


Because when you come out of your "Dementia State" you sometimes , with Lewy bodies, remember little bits of your strange behaviour, When you remember what you have done the previous day, thats not the worst of it, thats gone, but the FEAR of what is to come is absolutely terrifying. Its knowing that you could be doing something totally absurd and YET its completely out of your control!! A perfect example is two nights ago i stood bolt upright in the bedroom and asked the Staff (I thought i was in a cafe) "Excuse ME? Do you sell coffee ?? As usual Elaine says she put me back in bed and i went back to sleep, but that's just a moments example, , out of many hours when i am like that, and the most awful thing for me is sometimes, just sometimes i remember it!!

But what of Elaine ? This angel on earth, and what my Angel has to put up with most nights, Broken sleep, disturbed nights, and me being totally different during the night compared to the person she wakes up with ? This is such a cruel disease my friends, but please remember its a two way thing, it affects both carers and people with dementia alike. if i have a fear of the future, then i am so sure many more like me, in the same position are feeling the same, thing is, the one thing about living with this awful disease is you become very good at hiding your feelings, hiding your worries and hiding your tears, so sad, but so very true. We are all in this together, each and every one of us, at some time in our lives, we will ALL know someone with dementia, its time for things to change my friends, and to change right now !! Not talk about it, not hold a meeting about the last meeting about the last meeting etc, but to step up and make sure ALL are involved in every step of the way including decision making and changing the way we and others look at this disease.

Heres to a great 2015 for ALL OF US !!

Norrms Mc Namara Diagnosed with dementia

7 years ago and STILL fighting it !!

Please share
I say this cautiously, and only briefly, but when my husband was diagnosed with terminal cancer, we clung like crazy to the 'day at a time' method of keeping going - and, most of all, we clung to the logical possibility (probability?) that 'one fine day' the disease would cease to be terminal, and become 'manageable' and even 'curable'. It might even happen in his lifetime (alas, it didn't, but thinking that it might, became a crutch for us to hang on to.....)

Wishing you and your family all the best possible, Jenny
Dementia
Leaving The Front Door Open

Last night I left the front door of my mind open, and Lewy Body’s came walking straight in as if he owned the place. He is like a squatter who refuses to move out. Elaine says about an hour before I went to bed I had no understanding of what was going on or where I was. To be told this is soul sapping as I am completely helpless to stop my actions and to have no control over them is frightening beyond belief, but then things got much worse. I have often found myself stood in the front room, or bedroom, protecting my family from an unseen enemy to anybody else but they are very real and very present to me. Last night in the back of my mind I could hear my angel’s voice shouting Norrms! Norrms! Its ok, it’s ok! And a sentence that will haunt me forever as I heard her say.......

“Please come back to me “

At the very moment I returned to “real Time “ I was throwing the last punch into my pillow, hard and fast, and by the ache in my arm and the sweat on my brow it was quite obvious it had been happening for a couple of minute. I screamed one last time in frustration as I threw that last punch and fell into my loved ones arms, lost, confused and very frightened. It was only after a couple of minutes had passed did the awful truth dawn on me and I thought

WHAT IF…………………………………….. ?

OH MY GOD!!! Just the very thought made me shiver to the bone and I started to shake uncontrollably. For those of you who don't know me I abhor violence of any kind, to human or animals and if by chance I happen to see any kind of gratuitous violence on TV Etc. that is not a film but real life I have been known to be physically sick. So you can imagine what was, and still is going through my mind, I can’t even say it!! The most frightening thing is, according to Elaine this is not uncommon and thankfully up to now the only harm has come to my poor pillow, but still ??????????????

I despise this illness, HATE is a very strong word and I have always been brought up to forgive and forget, but if Ever? EVER? Even Just ONCE??
It doesn't bear thinking about. I am sorry if this post upsets anybody, but this is what this disease is really like, laid bare for all to see,


“” Unless we, with dementia teach? How can others learn??””


A very tired and weary Norrms, Elaine and family xxxxxxxxxxxxxxxxxx
Hiya all, what a Great day at South Devon Police HQ, Exeter !! We were also lucky enough to get a lift there and back, as especially the trip back as it was was full of flooded roads and heavy downpours .


The presentation was well attended 50+ and came from all depts of the Police force. There were so many questions after and when i announced half way through i actually have dementia, you could have heard a pin drop. We took so many leaflets about BOB Gps and care booklets etc and so pleased to say everyone of them was taken. We also sold over 25 Purple Angel Badges as well. We were there for two and a half hours and explained all about different types of dementia`s, sundowning, coloured crockery (That went down really well with the custody officers) hallucinations, night terrors etc, but the jobs not finished there.


Afterwards we were asked by two different departments if we would work together to improve things, the custody officers want us to write a report and work with them on behavioural problems and colours, and the people who train the new recruits during 18 weeks of training want us to set up "real life scenarios, and role play for the new recruits , of course we said yes and this will be ongoing . All in all , such a great day and so important to involve the emergency services as much as possible.


Long day but very fruitful, much love Norrms and family xxxxxxxxxxxxxx
What a brilliant post, Norms, so good to read, you must be so chuffed that it all went so well! Really lovely to hear of public sector workers engaging with people who actually live, sleep and breathe these things instead of learning via a dusty textbook!

Well done you, sounds like you've earned yourself whatever your favourite indulgent treat might be :)
953 posts