Dementia Sufferer, or Carer?

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
I know this might sound strange, but I do not know who I am talking to?

I've been trying to talk to other Dementia sufferers for some time now and that is how I got here, but it seems there are a lot of carers here too!?

Don't get me wrong, the post are great and I am sure play an important part in all that is dementia, but I just want to know if what is going on in my world is the same as anyone else that suffers too and I don't think even someone close can really know what is going on in my head!

I noticed that on the side it says... Registered User, or volunteer etc... could it say Dementia Suffer, or Carer, just so we can see..

I hope I have not offended anyone!?
 

DennyD

Registered User
Dec 6, 2016
264
0
Porthcawl, South Wales
I know this might sound strange, but I do not know who I am talking to?

I've been trying to talk to other Dementia sufferers for some time now and that is how I got here, but it seems there are a lot of carers here too!?

Don't get me wrong, the post are great and I am sure play an important part in all that is dementia, but I just want to know if what is going on in my world is the same as anyone else that suffers too and I don't think even someone close can really know what is going on in my head!

I noticed that on the side it says... Registered User, or volunteer etc... could it say Dementia Suffer, or Carer, just so we can see..

I hope I have not offended anyone!?
Hello, I appreciate what you're saying. Often when you know the circumstance of the one replying, it puts their response into perspective. You eventually work it out who is the carer and who is the dementia sufferer. I also appreciate "each group" will benefit from their own designated space.
 
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NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Hi DennyD and thank you for taking the time to reply....

I thought this was the place, but I'm not sure now!?

Out of 197 views, you are the only reply and to be honest.. I can not tell if you are a Carer, or one of us?

Have a good day!
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
If you click on the name of the poster, Richard and Fin, you can read their profile and that should tell you whether the person has dementia or is a carer. Sorry you are having trouble finding others with the condition on the forums. You are not offending anyone, if you feel you are suffering then you are a sufferer. My OH uses words to describe her fear of her condition which are not polite, but that is honestly how she feels about it.
 

Andrew_McP

Registered User
Mar 2, 2016
391
0
60
South Northwest
I've been sitting on this reply for a day or so, and wasn't going to send it, but I think I need to show a bit of the bravery you're showing since your diagnosis. :) So here goes...

I think you raise a very interesting point, and having a clear and obvious distinction between us might be helpful. I just went to see if I could change my user name to "Andrew_McP [carer]" but couldn't find that option. I might be missing a trick.

Anyway, I'm going to be honest -- but hopefully not disrespectful -- and say that until recently I didn't realise that many folk with dementia were, er, self-aware enough (especially for extended periods into a diagnosis) to be active on the internet. But more people may be getting diagnosed earlier now, and since I noticed folk like yourself and Countryboy posting it's made me worry a lot more about some of our brutally frank discussions and confessions as carers.

It's possible that many folk with dementia will be discouraged by browsing some of our threads and choose to avoid the forum altogether. And yet as a carer I've never needed somewhere to offload to and learn from more than I've needed this place! Life for both dementia 'sufferers' (a term we're discouraged from using no matter how appropriate it might be to many of our circumstances) and their loved ones is rarely easy and often thoroughly miserable. But not in all cases, as you clearly illustrate. That gives us all hope, which can be a bit thin on the ground sometimes.

I know my mother's journey was never self aware beyond being furious with the world for being so confusing, and furious at me for 'forcing' my help upon her. She was capable of writing short, messy emails at the peak of her powers, but that kind of thing left her very early in her decline. But there will be a generational thing at play there as well, and more people will probably be more tech-capable for longer as time goes on; tech will be more ingrained in their normal abilities. Whatever 'normal' means!

Everyone's experience is different, thankfully. And I've strayed way off the original point of your observation. Which makes me feel, as I often do, that I ought to delete this and simply say "Yes, you're right!"

But I've been contemplating saying something like this for a while, and this is as good a place to get it off my chest. I hope! It may be that while thinking about ways of identifying ourselves clearly, we might also want to think about a fully private area for those with dementia, where they can complain about the rest of us and get their frustrations off their chests. :)

I do worry about segregation and complexity though... and about whether I'll ever stop typing! I really do need to take my own advice about complexity and stop thinking out loud on forums. But dementia is a condition which challenges the very nature of being human, so it's only natural that we wrestle with it. I just happen to wrestle in public... which might just get me 'awrested' one day. ;-)
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Hi, nae sporran.... thanks for the information... much appreciated!

I can understand your other half using words that my not be quite right, because when you are told you are f............ having a few problems that will impact on your future life... then I think that they were most likely spot on!

I never used to swear so much, but now... it as if the frustration comes out that way! Try banging your thumb with a hammer and going, ' oh dear!' Well it's the same... but we have been hit with a much bigger hammer!

Have a great day both!
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
I rarely look at this forum because I thought it was for what it says in the title. I have seen videos by one of the contributors to this forum on a course I did, so came to look at it for information. Then I realised that not all the posts were by people with dementia and was a bit confused. I don’t see why anyone can’t post here but perhaps it would help to clarify the point of view I am coming from if I add that I am looking after my husband with Alzheimer’s disease. I am aware that many people with dementia are aware and living alone and making provision for their disabilities and am in awe of them. Many people simply don’t understand what is wrong or don’t want to know what is wrong or are so badly affected by the disease that they couldn’t possibly live alone without being at risk of injury, starvation or something. So all information is valuable but perhaps we need to know from what point of view people are coming from?
 

Countryboy

Registered User
Mar 17, 2005
1,680
0
South West
Hi Richard & Fin you raid a good question and there are so great comments from Andrew_McP as well.

I expect by now you will know I have dementia diagnoses for 20 years now both parents had dementia , and my Mums Sister & Brother obviously the dementia didn’t affect us all in the same way however they all lived at home until their passing my dad was 85 mum 93 her Sister 91 & Brother 89 although mums Sister did go into a home for a few week prior to her death all passed away with Cancer.

During my twenty years with Dementia attending Clinics & in the beginning Memory Cafes was mixing with many dementia suffers they were all able to converse and understand what was going on { obviously I realize there are dementia suffers in Intuition’s or Car Home’s } I accept that.

TP members when I joined in March 2005 there was none of this data protection stuff and I became friends with other TP members we had personal contact through email & phone , one member in particular I became

close to was Barry the Bread from Indonesia we email each other 3 or 4 times a week sadly he has passed away now, I had personal contact with Katherine W who was in charge of TP again by email & phone Katherine W supported me a lot back around 2006 -2010 when I got into battles with employers , DVLA etc lovely Lady, unfortunately its all gone the personal touch isn’t there anymore.

I also realize it can be difficult for families who never had any prior dealings with dementia to worry and in most cases only look at the worst situations but it is Important when discussing a person with dementia you put their AGE

because that is a major factor, a person aged 60 and a person aged 80 with 20 years more of natural ageing well the answer is there.

well I’m off for dinner. and Remember guys it’s your life take care of it your only here the Once so Look at everything positively live life to the full and most importantly ignore all Negative comments because doom & gloom will drag you down ( Always Look on the Bright Side Of Life )


Countryboy
 

DennyD

Registered User
Dec 6, 2016
264
0
Porthcawl, South Wales
Hello, I appreciate what you're saying. Often when you know the circumstance of the one replying, it puts their response into perspective. You eventually work it out who is the carer and who is the dementia sufferer. I also appreciate "each group" will benefit from their own designated space.
Oops! Yes, I should have stated I'm a carer to my husband. I read posts on this forum, to learn from those with dementia. My husband does not engage with the site partly because of his inability to navigate it, but also he has never shown interest in social media. I too do not like segregation but believe there is a need for dedicated 'groups' where people can freely talk about their issues, as I feel that sometimes the contributions of 'others' can be a hindrance to free expression of feelings. There needs to be a trusted space for those whose live are directly affected by the condition. In this you and other sufferers, yes carers suffer too, immensely so but I cannot fully grasp what it must be like for you. Us carers have our own space. Best wishes
 
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NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Good point about not being engaged with the online thing... it isn't everyones thing!
I'm stuck in.. so I find it the only way really... If there was a simple app that could make it easier for us to interact online!? Need an App developer... any ideas?

I certainly don't like the idea of segregation, it only causes problems, but I would just like to know if the person chatting feels it, or sees it... if you know what I mean? It's different?

I want to change the word... Sufferer..I don't really suffer.. I just rant and go a bit of track and get lost in my own space. It is others that I think are the sufferers. You have to put up with often a stranger in you midst!

So what could we call people with dementia?
 

DennyD

Registered User
Dec 6, 2016
264
0
Porthcawl, South Wales
Good point about not being engaged with the online thing... it isn't everyones thing!
I'm stuck in.. so I find it the only way really... If there was a simple app that could make it easier for us to interact online!? Need an App developer... any ideas?

I certainly don't like the idea of segregation, it only causes problems, but I would just like to know if the person chatting feels it, or sees it... if you know what I mean? It's different?

I want to change the word... Sufferer..I don't really suffer.. I just rant and go a bit of track and get lost in my own space. It is others that I think are the sufferers. You have to put up with often a stranger in you midst!

So what could we call people with dementia?
 

DennyD

Registered User
Dec 6, 2016
264
0
Porthcawl, South Wales
Good point! Just did a quick search on alternatives. Plenty of articles about terms and descriptors viewed as derogatory including 'sufferer". But no clear suggestions to alternatives, the most common suggested is 'person with Alzheimer's/ Dementia' etc. So your question what should we call a person with dementia, may well be exactly that. What are your thoughts?
 

Tennessee22

New member
Apr 30, 2019
4
0
I realize this is an older post but it hones in on my own thoughts. I am very newly diagnosed with Vascular Dementia. In trying to find support group and resources I am blown away by how many are for care givers. No one seems to realize not all with this disease are so far advanced they need a caregiver. Many like myself are independently functional at least for today. My diagnosis session included words like advanced, severe and ended with
” You are a poster child for vascular dementia”. Small comfort that. I am searching for others to both give and receive support for this scary journey. Thanks for letting me vent.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
Hello @Tennessee22 and welcome
I'm glad you have found this supportive community, and there certainly are other members with a diagnosis themselves, as you have discovered ..... so vent away, with anything that's on your mind, that's what TP is here for
 

Whisperer

Registered User
Mar 27, 2017
386
0
Southern England
I have read through this thread and it has made me stop and think. Please Carers do not stop posting honestly as this forum is a good way to just vent frustration at times, as well as gain advice. That said the forums are carer focused and this thread suggests to me that needs to change. My mum cannot recognise her condition, that is my experience and in the Carers group I belong to. Clearly there are individuals diagnosed with dementia and in a very different place. They need their own forum. But also can we not really help each other with the forums open to all? There are issues here which need careful consideration. Perhaps this is one of those moments of careful pondering when the site organisers need to sit down and consider if change is required. Thank you Richard and Finn, Andrew McP and Countryboy for opening up an interesting conversation. And to the others who have posted. Very enlightening to me, but maybe I just live to quiet a life.
 

Tennessee22

New member
Apr 30, 2019
4
0
I have read through this thread and it has made me stop and think. Please Carers do not stop posting honestly as this forum is a good way to just vent frustration at times, as well as gain advice. That said the forums are carer focused and this thread suggests to me that needs to change. My mum cannot recognise her condition, that is my experience and in the Carers group I belong to. Clearly there are individuals diagnosed with dementia and in a very different place. They need their own forum. But also can we not really help each other with the forums open to all? There are issues here which need careful consideration. Perhaps this is one of those moments of careful pondering when the site organisers need to sit down and consider if change is required. Thank you Richard and Finn, Andrew McP and Countryboy for opening up an interesting conversation. And to the others who have posted. Very enlightening to me, but maybe I just live to quiet a life.
I
 

Tennessee22

New member
Apr 30, 2019
4
0
I hope you know I meant no disrespect and I am very sure this forum is a great outlet for many. After spending several days trying to find a support group for newly diagnosed, functional people with this my frustration has mounted steadily. Just trying to get my feet wet in first accepting then learning to live with the new normal. I have to compliment the UK Alzheimers Association for being light years ahead of the USA in terms of a toolbox to help you understand and adjust. Here we have a very long way to go. Again apologies if I offended anyone.
 

Tennessee22

New member
Apr 30, 2019
4
0
Hello @Tennessee22 and welcome
I'm glad you have found this supportive community, and there certainly are other members with a diagnosis themselves, as you have discovered ..... so vent away, with anything that's on your mind, that's what TP is here for
Thank you for the welcome. As you might think, I am still trying to feel at home or welcome in my own body. Hopefully, I will adjust quickly. I see my primary doctor on Friday and will be much more prepared. While I knew I had some issues and had myself asked for testing to gain a baseline I was 100% unprepared for my diagnosis. It's is at this point a scary tunnel without lights.
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Hi Tennessee22

I was diagnosed in 2017 and still can not believe it. It depends on how you look at it.... being diagnosed still doesn't give you an end date and it doesn't mean you have to stop living now! I hear from others that have terminal illnesses, and have a time given, and they talk of a freedom and a time to enjoy life. So, I suppose we have to do the same... make your bucket list, learn to fly, paint a masterpiece... whatever you want!

I believe that this not really a disease, but a syndrome and I'm hopeful that by changing my life for the better and living my life to the full, I can beat this.

What the alternative!? It's not easy though, there are still those times when I think why bother!?

I know it is hard, but try and be positive... don't stop... in fact speed up and enjoy life!
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,296
0
High Peak
Hi Tennessee22

I was diagnosed in 2017 and still can not believe it. It depends on how you look at it.... being diagnosed still doesn't give you an end date and it doesn't mean you have to stop living now! I hear from others that have terminal illnesses, and have a time given, and they talk of a freedom and a time to enjoy life. So, I suppose we have to do the same... make your bucket list, learn to fly, paint a masterpiece... whatever you want!

I believe that this not really a disease, but a syndrome and I'm hopeful that by changing my life for the better and living my life to the full, I can beat this.

What the alternative!? It's not easy though, there are still those times when I think why bother!?

I know it is hard, but try and be positive... don't stop... in fact speed up and enjoy life!

May I ask, are we allowed to know who Fin is? Forgive me if that's an intrusive question and feel free to ignore it!

But I bet I'm not the only one who is curious! :rolleyes::oops::D

I enjoy reading your posts :)