Why dont you believe me ??

[Norrms]

WHY DONT
YOU
BELIEVE ME?

I AM 53 YEARS OLD!!!
53 YEARS OLD JUST TURNED!!
I HAVE ALZHEIMER`S (EARLY ONSET)
WHY DONT YOU BELIEVE ME???
DOES ANYONE BELIEVE ME??
DO I BELIEVE ME??

These are but a few of the things that run through my head every time the subject of Dementia is brought up with either people I haven’t seen for a while or people we meet. I can see it in their eyes! I can almost hear the doubt quickly run through their minds as I try to explain how a thing like this could have happened to me at 53yrs old. DEAR GOD!! I was diagnosed at 50yrs old and had problems a while before that!!

Nobody warns you about these feelings, nobody has wrote a book of instructions of how to deal with emotions and un answered questions which you ask yourself time and time again!! Or is that just me?? Sometimes when I sit there at the memory cafe`s and look around me I can see my future. A future so bleak sometimes it’s hard to put into words what thoughts run through my mind. Every day I struggle with my emotions and understanding of the illness I have. Yes I read about it all the time and yes I am learning something new every day, but too what end? I sometimes have trouble believing if I actually have this awful disease as I can’t remember most of the bad times. And If I can’t convince myself what chance do I have of convincing others??

It’s at times like this the self doubt creep`s in and as I sit here writing this I have this awful feeling of impending doom at any moment now!! My stomach turns in tight knots and my hands shake as if I have had too much to drink the night before (misspent youth). I begin to doubt my abilities not only as a family man but also my life in general. I want to provide for my family so I know all will be ok in the future; I want to make sure they are all settled and happy. A billion thoughts like this race through my mind at a million miles an hour.

Then it feels as if my heart has just hit my stomach floor and all seems so dark and distant. Nothing seems worth the effort, nothing seems worthwhile and every little thing in my life is worried about, scrutinised and grossly overestimated in so many ways. I stop listening to my Angel who says! We will cross that bridge ECT” I think everything is going wrong and nothing and nobody can solve this one for me. I feel as if I am worthless because I can’t do what I want to do and I can’t do what I used to do. I feel as if I can’t do anything, and I also feel as my life is coming to an end and it’s so out of mine and my families control.

THIS IS THE REALITY OF ALZHEIMER`S
THIS IS THE REALITY OF A DIAGNOSIS
THIS IS THE REALITY OF MY LIFE FROM TIME TO TIME.

Please don’t pity me and please don’t feel sorry for me, on my good days I help run the Alzheimer’s cafe`s and the Torbay Dementia leadership group as well as writing several blogs here and abroad.

But please, the next time someone tells you they have dementia, no matter at what age, please just take that little extra time to try and understand how hard it is for them to tell you something like this and how they wish things were different, PLEASE

Best wishes, Norrms and family xxxxxxxxxxxxxxxxxx

 

[Maggiemay]

Oh Norms I'm thinking of you right now sat here at my computer....

I am very new to Alzheimers and Dementia and don't know what to

say but I can feel from

your post how very upset you are...I just want to say that

I send you a big hug through cyberspace x

 

[TinaT]

Norms I don't feel pity for you. You are a vibrant, warm and most loving man and this wonderful aspect of you will never leave you.

I'm so very grateful for the insights you give me. I know that my darling Ken also feels as you do and has done for a long, long time. He has never been able to articulate this as his early onset went so quickly from one stage to another but I thank you so much for giving him a voice.

xxTinaT

 

[Norrms]

Hiya

Thank you my dear friend Tina and i hope to give your darling Ken and others "A Voice" for as long as i possibly can, best wishes, Norrms and family xxxxxxxxxxxx

 

[lin1]

Dear Norrrms

If people dont believe you when you tell them you have EOA, its partly because out in the wide world its hardly known, maybe those people when they get home , will go online and do a bit of reading up .
So you are raising awareness . And I think you are very BRAVE

It may also be they dont know what to say ,being stunned or out of politeness.

Norrrms your other worries and fears are I think perfectly normal
But your dear Angel is right ,so do listen to her

I dont pity you or feel sorry for YOU ,but like probably everyone here J am sorry you have this illness especially so young

You are not taking this illness laying down. You are fighting it tooth and nail, not only that you are fighting for and helping otbers
I ADMIRE YOU

 

[benny]

norms you are so courageous and every time you post, its to inspire, encourage and lead people into the unknown rhat we as carers dont experience and so is invaluable to us, to get some sort of understanding of what our loved ones are going through. And each time you post you can feel the love that is within you and your family, and it warms my heart to see how very fortunate you are to have that. Hope you are feeling much better real soon, my thoughts are with you my friend Cheers Robyn x x x x

 

[Norrms]

Hiya

hello my friends and thank you, its so hard sometimes to even think of tomorrow so i just wanted to highlight some of the many frustrations i go through, i am glad it has helped towards a better understanding, much love to you all, best wishes, Norrmsa and family xxxxxxxxx

 

[sad nell]

Thanks yet again Norrms, hope you have more light hearted day tomorrow, sharing your feelings and emotions with us all is so important to all us carers and helps so many to understand the unknown love Pam and thanks from Trev for speaking for him

 

[Helen33]

Dear Norrms,

I can see it in their eyes! I can almost hear the doubt quickly run through their minds as I try to explain how a thing like this could have happened to me at 53yrs old.

I used to get so angry when I saw the look in people's eyes when they were with Alan and myself. When I used to say that I loved 'our life' even with dementia, I could see that look of disbelief in their faces. I loved our life - we had a wonderful life for as long as it could be. There were terrible times here and there and certainly traumatic at the end. I think I understand more now why they had that look in their eyes. I didn't then. I didn't see what they saw. I saw my handsome man, capable of love, of communication (in other ways than talking), of usefulness in life (cutting up bread for the birds and sweeping up the leaves at the end of his life). I saw his gentleness with the animals and I loved him. Not many people could see these things.

As you post Norrms and as I experience you, I see these things too. There are differences because you have more fight in you than Alan because he lost that ability and the ability to have language You use what you have to the best of your ability and I love the way that you are truly valued by me and I am sure most Talking Point members. It was TP that gave value to Alan's life - including you and for that I thank you my friend

Love

 

[miss cool]

HI Norrms well my freand you are at the point ware you will get used to it , all the way through my illness those times come ,and every time you get through it dont ask me how or whey, after haveing it for about 4 to 5 years naw i am getting to except it still trying to fight it but i am no fool i now i cant win . but i promiss you i am still pooping myself its no fucher but thats it for now...... love miss cool.xxxxxxxx

 

[Barry]

Hi Norrms, I can understand how you must be feeling about your illness in the same way as I do… although I was diagnose at 59 years old, yet people still can’t relate, or do not want to acknowledge the illness and the fact that as years have flown by it’s no longer an illness that is just related to elderly people… in fact the age of people now falling victim to the illness is becoming much younger, I’ve even read cases of people in their 30s being diagnosed with Alzheimer’s or other types of dementia and even a young girl of just 9 years old who has Alzheimer’s… so not only should the doctors, specialists, professors, and the medical researchers be looking for a cure they should also be looking for the cause!! As to my Alzheimer’s… mind if you can’t identify the cause… how can you find a cure!! And it also brings to light that despite all the efforts of different people and media converge that the message about this terrible illness still is not sinking in with the general population and I’m not just talking about the UK… but Worldwide, all we can do is to keep battling on driving the point forward as hard as we can, of which I’m with you every step of the way.
Barry

 

[nicoise]

Admiration, not pity!

Hi Norrms,

I don't pity you, but I do feel sad for you and your family that you have developed EOA.

Like Lin1, I ADMIRE you for all your efforts at both trying to live a full life despite the challenges, and for all your work in publicising the truth about EOA.

When people look impatiently at my mum in the supermarket as she tries to shop slowly or remember her PIN number, I want to say to them "There but for the grace of God go you - this could be your future". None of us know what is round the corner, as you didn't. But you could make an enormous difference for those to whom this will be a reality one day but don't know it yet.

You prove that it is possible to still be a successful contributor to, and enjoyer of, life very well despite AZ - it is not a case of shutting up shop at the moment of diagnosis.

You (and Miss Cool) are also a voice of explanation of and insight to what is happening in your head for those who have lost their voice - you educate those of us who care for the "voiceless" ones.

Please believe in yourself, keep up the good works, but look after yourself first.

Best wishes

 

[Norrms]

Hiya

Good morning my friends and thank you, i am humbled by your words xxxxxxxxxxxxxxxxxx