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A Nowhere man

Norrms

Registered User
Feb 19, 2009
5,529
0
Torquay Devon
A NOWHERE Man
This disease of dementia is the worst of diseases, with so many twists and turns, so unpredictable, and just when you think you have seen it all or felt it all, along comes another wave of what
dementia dishes out. And by this I mean??
Just lately I have not felt that well, I have been quiet, withdrawn and sullen, and as everyone who knows me this is totally opposite to who I am. I have spoken before about feeling lost but this is
different, I have been feeling as if I am not really here, does that sound really weird?? No?? Well I can tell you is does to me. I can see and hear all that’s going on around me, but it all sounds like a distant echo and I can’t seem to catch what’s being said properly, so frustrating. My spatial awareness is also much worse and this means I am shuffling or look as if I have had a drink when I
haven’t.
Is this my blood pressure? Or is it because I am too tired? I have always advocated that some use their illness as an easy excuse and as a GO TOO every time something’s wrong but I have never done
that. Some mornings I feel as if someone has put net curtains in front of my eyes and it’s so hard to see clearly. Now this is quite worrying because it’s the way I felt in the early stages of my dementia, also my words don’t come out as they should and I sound like I am stuttering which is also something that happened in the early days. All these things just to serve my fears that things are
getting worse, but yet, some days I can speak, see, walk properly and be my normal self, so as you see there is no rhyme of reason to this disease for any of us with dementia. There is a very old saying in the “Dementia World” that states “When you have met one person with dementia, you have met ONE PERSON with dementia” and that’s why it’s so important that people understand it’s not all the same, it doesn’t play to the rules. If you get a cold or the flu we all know the symptoms’, but within dementia the symptoms are so very diverse I would be here all day explaining them all to you.
The Beatles once sang “He`s a real nowhere man, sitting in his nowhere land, making all his nowhere plans for nobody” and as sad as that sounds, that`s what it feels like sometimes living with
this awful disease.
The loneliness can be crippling and yet we have so many around us who love and care for us, that’s when the guilt monster comes to visit and you feel so guilty feeling like this and know you shouldn’t, and yet, try as you might to shake those feelings, you just can`t . These kind of feelings can last for days or just a few hours, nobody ever knows, but as I wake each day knowing I have this terminal disease, it’s never that far away from my thoughts, I still hope it’s just a blip and normal service will be resumed as soon as possible as they say. But we have to carry on don’t we??
Surely the easiest thing would be to give up and let nature take its course, wouldn’t it??
But that’s not for me; I am a fighter and always will be, I will fight till the end, whenever that may come.
 

CAL Y

Registered User
Jul 17, 2021
354
0
Hello Normms. Thank you for this post.
As a former carer for my husband, I think that many of us get so wrapped up in our own grief and fear for the future that we almost don’t realise what the PWD is going through.
You are very brave sharing you feelings like this.
All my good wishes to you.
 

SeaSwallow

Registered User
Oct 28, 2019
231
0
@Norrms I find your posts so amazing in helping me to understand just a little of what my husband must feel at times. I hope that your current feelings soon pass and I also know that you will continue to fight this awful disease.
 

yosser

Registered User
Nov 12, 2020
209
0
@Norrms : Very nicely put together of how people suffering with Dementia feel from time to time a disease I wouldn’t wish on my worst enemy . From anxiety attacks, to depression , frustration , wanting to hide away from the world, there’s no rest bite from it. Or for the career’s who do their best to care for us. I have my own way of taking it on through exercise, reading, etc. Just hang in there I am sure you will be okay.
 

yosser

Registered User
Nov 12, 2020
209
0
@Norrms : Very nicely put together of how people suffering with Dementia, do feel from time to time a disease I wouldn’t wish on my worst enemy. From anxiety attacks, to depression, frustration, wanting to hide away from the world, there’s no rest bite from it. Or for the career’s who do their best to care for us. I have my own way of taking it on through exercise, reading etc. Just hang in there I am sure you will be okay.
 

Bakerst

Registered User
Mar 4, 2022
178
0
Thank you so much, it really does help the carer to help the person they are caring for.
I hope it doesn't hurt when you read some of the posts from carers, we or I just need to get things out sometimes and this is the safest most understanding place to do it
My best wishes and respect to you
 

Hazel 1944

New member
Dec 14, 2021
7
0
Thank you for this. My husband explains similar experiences to me and I try to understand.
It is a vicious and cruel disease and contributions such as yours are very very valuable and important. Good Luck.
 

Dunroamin

Registered User
May 5, 2019
275
0
UK
Thank you for posting @Norrms . This cruel disease that removes our self by stealth is rarely seen from our perspective. I sometimes feel almost guilty for commenting after reading the carer posts, but like you, feel I must (at least while I can.)

I have just surfaced from an 'always sleeping' phase. Whilst I seem to be more capable than the last week, I am aware that these episodes leave me with an increasing deficit in abilities, albeit slowly. Like you, I fight like mad against this. Your net curtain description is spot on - so much so that the first time it happened I was convinced I had detached retinas.

The worst things I find are people saying "well you look all right to me." OH's reply is now always along the lines of humbly saying he didn't realise they were a neurological expert, and apologising (meets with interesting responses.) OR those who say "I think I have that, cant remember a thing!" Grrr.

Keep on posting, raising the awareness of those of us with this and I wish you continuing strength in the fight.
 

DreamsAreReal

Registered User
Oct 17, 2015
425
0
Thank you for posting @Norrms . This cruel disease that removes our self by stealth is rarely seen from our perspective. I sometimes feel almost guilty for commenting after reading the carer posts, but like you, feel I must (at least while I can.)
I'm sorry to hear that, @Dunroamin I know I'm not the only carer posting on here who values your input (and @Norrms input of course). And sorry to @Norrms that you're going through such a bad spell, it sounds horrendous. I hope it's just a temporary blip and you feel better soon. Take care, both of you xx
 

Tricot

Registered User
Jun 20, 2017
148
0
France
Hello Norms, so sorry to read that life has become more difficult for you but send you my best wishes that this phase will pass and 'normal service will be resumed'. You write so articulately and there are so few PWD able or willing to do this. More power to your elbow!
 

Palerider

Registered User
Aug 9, 2015
3,182
0
North West
A NOWHERE Man
This disease of dementia is the worst of diseases, with so many twists and turns, so unpredictable, and just when you think you have seen it all or felt it all, along comes another wave of what
dementia dishes out. And by this I mean??
Just lately I have not felt that well, I have been quiet, withdrawn and sullen, and as everyone who knows me this is totally opposite to who I am. I have spoken before about feeling lost but this is
different, I have been feeling as if I am not really here, does that sound really weird?? No?? Well I can tell you is does to me. I can see and hear all that’s going on around me, but it all sounds like a distant echo and I can’t seem to catch what’s being said properly, so frustrating. My spatial awareness is also much worse and this means I am shuffling or look as if I have had a drink when I
haven’t.
Is this my blood pressure? Or is it because I am too tired? I have always advocated that some use their illness as an easy excuse and as a GO TOO every time something’s wrong but I have never done
that. Some mornings I feel as if someone has put net curtains in front of my eyes and it’s so hard to see clearly. Now this is quite worrying because it’s the way I felt in the early stages of my dementia, also my words don’t come out as they should and I sound like I am stuttering which is also something that happened in the early days. All these things just to serve my fears that things are
getting worse, but yet, some days I can speak, see, walk properly and be my normal self, so as you see there is no rhyme of reason to this disease for any of us with dementia. There is a very old saying in the “Dementia World” that states “When you have met one person with dementia, you have met ONE PERSON with dementia” and that’s why it’s so important that people understand it’s not all the same, it doesn’t play to the rules. If you get a cold or the flu we all know the symptoms’, but within dementia the symptoms are so very diverse I would be here all day explaining them all to you.
The Beatles once sang “He`s a real nowhere man, sitting in his nowhere land, making all his nowhere plans for nobody” and as sad as that sounds, that`s what it feels like sometimes living with
this awful disease.
The loneliness can be crippling and yet we have so many around us who love and care for us, that’s when the guilt monster comes to visit and you feel so guilty feeling like this and know you shouldn’t, and yet, try as you might to shake those feelings, you just can`t . These kind of feelings can last for days or just a few hours, nobody ever knows, but as I wake each day knowing I have this terminal disease, it’s never that far away from my thoughts, I still hope it’s just a blip and normal service will be resumed as soon as possible as they say. But we have to carry on don’t we??
Surely the easiest thing would be to give up and let nature take its course, wouldn’t it??
But that’s not for me; I am a fighter and always will be, I will fight till the end, whenever that may come.
A powerful message and thank you for sharing
 

acomfort

New member
Jul 7, 2022
1
0
A NOWHERE Man
This disease of dementia is the worst of diseases, with so many twists and turns, so unpredictable, and just when you think you have seen it all or felt it all, along comes another wave of what
dementia dishes out. And by this I mean??
Just lately I have not felt that well, I have been quiet, withdrawn and sullen, and as everyone who knows me this is totally opposite to who I am. I have spoken before about feeling lost but this is
different, I have been feeling as if I am not really here, does that sound really weird?? No?? Well I can tell you is does to me. I can see and hear all that’s going on around me, but it all sounds like a distant echo and I can’t seem to catch what’s being said properly, so frustrating. My spatial awareness is also much worse and this means I am shuffling or look as if I have had a drink when I
haven’t.
Is this my blood pressure? Or is it because I am too tired? I have always advocated that some use their illness as an easy excuse and as a GO TOO every time something’s wrong but I have never done
that. Some mornings I feel as if someone has put net curtains in front of my eyes and it’s so hard to see clearly. Now this is quite worrying because it’s the way I felt in the early stages of my dementia, also my words don’t come out as they should and I sound like I am stuttering which is also something that happened in the early days. All these things just to serve my fears that things are
getting worse, but yet, some days I can speak, see, walk properly and be my normal self, so as you see there is no rhyme of reason to this disease for any of us with dementia. There is a very old saying in the “Dementia World” that states “When you have met one person with dementia, you have met ONE PERSON with dementia” and that’s why it’s so important that people understand it’s not all the same, it doesn’t play to the rules. If you get a cold or the flu we all know the symptoms’, but within dementia the symptoms are so very diverse I would be here all day explaining them all to you.
The Beatles once sang “He`s a real nowhere man, sitting in his nowhere land, making all his nowhere plans for nobody” and as sad as that sounds, that`s what it feels like sometimes living with
this awful disease.
The loneliness can be crippling and yet we have so many around us who love and care for us, that’s when the guilt monster comes to visit and you feel so guilty feeling like this and know you shouldn’t, and yet, try as you might to shake those feelings, you just can`t . These kind of feelings can last for days or just a few hours, nobody ever knows, but as I wake each day knowing I have this terminal disease, it’s never that far away from my thoughts, I still hope it’s just a blip and normal service will be resumed as soon as possible as they say. But we have to carry on don’t we??
Surely the easiest thing would be to give up and let nature take its course, wouldn’t it??
But that’s not for me; I am a fighter and always will be, I will fight till the end, whenever that may come.
I've found that I can not carry on a conversation, partly because I loose words.
I've found that no one trusts my ideas anymore . . . very understandable.
I frequently say something wrong which is very embarrassing.
Many things that I say are wrong but very unimportant so there would be no harm done if I was not corrected.
If I say something like it rained yesterday and it was 2 days ago, there would be no harm done if I'm not corrected then I would not have to go through being embarrassed . . . That hurts when I am wrong so often. acomfort
 

DreamsAreReal

Registered User
Oct 17, 2015
425
0
@acomfort I'm sorry people are correcting you so much. A lot of people just do this without thinking and they probably don't realise how damaging it is for the self esteem of the person who has Dementia. Until I read the Compassionate Communication post on this forum, I had no idea either. You're absolutely right, people shouldn't be correcting you for things that really don't matter.

I wish everybody could read the Compassionate Communication guide. My best wishes to you. x
 

OldTurtle

Registered User
Jul 10, 2022
17
0
A NOWHERE Man

My spatial awareness is also much worse and this means I am shuffling or look as if I have had a drink when I haven’t.
This is a big one. I have been accused of being drunk many times

....my words don’t come out as they should and I sound like I am stuttering which is also something that happened in the early days. All these things just to serve my fears that things are getting worse, but yet, some days I can speak, see, walk properly and be my normal self, so as you see there is no rhyme of reason to this disease for any of us with dementia.

The loneliness can be crippling and yet we have so many around us who love and care for us, that’s when the guilt monster comes to visit and you feel so guilty feeling like this and know you shouldn’t, and yet, try as you might to shake those feelings, you just can`t .
Surely the easiest thing would be to give up and let nature take its course, wouldn’t it??
But that’s not for me; I am a fighter and always will be, I will fight till the end, whenever that may come.

Very powerful. I have tried to cut out some but keeps the things you and I share. Thank you.
 

yosser

Registered User
Nov 12, 2020
209
0

This is an interesting to read other peoples experiences from who have this disease. I have varied ways of combating it , eat brain food which I found out from reading Tattoo on my brain)
quite a lot of what's in the book I can relate too. Keeping fit reading, word search, listening to music all seem to help.