I Know, But Should I... If I Have It!? Do You Know?

Discussion in 'I have dementia' started by Richard and Fin, Apr 12, 2019.

  1. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    126
    Male
    Alvechurch
    I have dementia... well i should say, I have been diagnosed with dementia!
    This was devistating as I'm sure all that have had that moment, know only too well!?

    I could not except this and looked for reasons why they were wrong. However, as the support progressed at the Juniper Centre staff, especially with one psychologist... I think that is what he was... who was very direct, honest and explained it all to me, and my family, and answered any questions. With the realisation that what had developed was true, I was aware of this thing eating away at me.. I started to accept the inevitable, but if I had dementia.. . would I know I have it?

    This really got to me and I became sure that I shouldn't be able to understand the dementia I had, surely that was the very nature of dementia!?

    It still gets me sometimes... so I would like to ask those of you in the same sittuation...

    Do you know?
    Are you aware of what is happening?

    I hope this makes sense!? :(
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    That makes perfect sense @Richard and Fin.:)

    My wife has mixed dementia and is at the stage where her short term memory is no longer functioning. However, on days when she is running me ragged and, in exasperation/exhaustion, I ask why she is being so difficult she will remind me that she has dementia!

    My wife was informed of her dementia diagnosis, at the clinic, in a very blunt manner and I think the emotional response that the news generated imprinted the fact on her consciousness.

    Best of luck to you. Do keep posting for support.
     
  3. lis66

    lis66 Registered User

    Aug 7, 2015
    239
    Hi Richard and Fin sorry for your diagnosis sending (((hugs))) to you ,you will find great support on here xx
     
  4. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    My mother knew. Even when the doctor was saying it was just age-related memory loss, she insisted on him sending her to the memory clinic for testing. She often talked about it (she's too ill now to discuss it any more). I know that's quite unusual, but some people with dementia are aware of it.
     
  5. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    126
    Male
    Alvechurch
    Hi Sirena and thanks for reply!

    I think more people with dementia are aware of it than not. However, I do think this is very much dependent on what level of dementia that person is at.

    I would like to hear from anyone that has dementia and is posting here?

    All the best to you Sirena and your Mum!
     
  6. nitram

    nitram Registered User

    Apr 6, 2011
    18,830
    Male
    North Manchester
  7. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    126
    Male
    Alvechurch
    #7 Richard and Fin, Apr 15, 2019
    Last edited: Apr 15, 2019
    This is the, I have dementia forum!?
    You have given me a link that returns me here!? :rolleyes:

    As it was called, I have dementia, I assumed that this meant it was a forum for dementia sufferers’ to use? Who do you think this forum is intended for?

    I do check thread, and profiles, and I am looking at how dementia affects others to compare my own symptoms ... I have dementia, why do you think I am here?

    Do you have dementia as your profile doesn’t say?
     
  8. nitram

    nitram Registered User

    Apr 6, 2011
    18,830
    Male
    North Manchester
    You are already doing what I suggested, looking at profiles and posts of thread starters, comparing their experience, and maybe joining in one of their threads.

    I don't have dementia, I joined TP because my late wife had LBD, I don't start threads in the forum, like many others without dementia I join in and try to help/
     
  9. San 'Fairy' Ann

    San 'Fairy' Ann Registered User

    Jun 28, 2014
    31
    Female
    merseyside
    Hi, yes to both. It's one of the hardest parts of the journey for me and sometimes I really try hard to fix this thing and look deep inside for the old me
     
  10. Richard and Fin

    Richard and Fin Registered User

    Jun 10, 2017
    126
    Male
    Alvechurch
    #10 Richard and Fin, May 6, 2019
    Last edited: May 6, 2019
    Hi San'Fairy'Ann... really.... that is your name!? Love it! Do you have a preference.... San, Fairy, or Ann!? :rolleyes: I used to live on a narrowboat and I was known as Wobbly Dick... I wobbled a lot and my name is Richard... I had to change it! :eek:

    Sorry about that.. seem to be in a funny mood this morning... got to take medication! o_O

    I'm with you about how hard it is to keep motivated to fix this, but we don't have a choice really... do we? We are stuck with it and how we, and others deal with it... is up to us!

    I'm going to beat it... or die trying! In fact I think it is most likely that I will die anyway... I heard it somewhere it happens to us all!? I'll do everything and anything I can; I have told my family that I will take part in any testing, research, or anything else that will help me achieve this goal. I tell the neurologist, you can operate and looking inside my head... I give you permission... he smiles and nods... you just know what he is thinking, but what he doesn't know is that I am deadly serious!

    One of the main problems with being diagnosed with dementia, is you stop being you, you become one of them! It is like this mad Zombie graze... everything is Zombies... we are all running around, in our own lost World, doing all the maddening things that we do, or expected to do and treat us as one big entityo_O:rolleyes::oops::eek::D:confused::mad::(;):)


    Looking inside... yea know that feeling.. looking for the something that is not quite reachable.... it's dark and it seem to want me.. it is so easy just to let that darkness take over... I think we are still there, somewhere, we just have to find our way back!

    I will finish with telling you how I exist.... There are two parts of me... Me and Mini Me.... Me is what everyone sees from the outside looking in... this is often out of my control. Mini Me, is the me inside, what people don't see... Mini Me is inside my head, locked away to a turmoil of trying to get Me to do what I want! Mini Me can not keep control of everything to do with Me; even communication is more often than not, one way. It is Mini Me that is here now, writing this post, because it is the only way I get to tell anyone what is happening in my World. Mini Me has time to think, plan, edit, re-edit, read and re-read, take the time to process my thoughts and then my fingers do the typing! Me and Mini Me are in a constant battle... Mini Me is trying to keep this big lump of a machine from breaking down anymore... when one thing seems to be working ok, something else is falling to bits.... Keeping the lines of communication open is probably the most challenging.... I think I won't let them go... but that is when Me... starts ranting with the outside World and they don't have a clue what I'm talking about!?
     
  11. Tomsnan

    Tomsnan New member

    Nov 27, 2018
    3
    Hi, I have dementia and am very aware of it, it has always puzzled me that I can remember this fact when I have so much trouble remembering everything else. I go through periods of denial, ie if I really had dementia I wouldn’t know so I can’t have it and other ties accept that all the symptoms are because I have dementia. Doesn’t make sense to me so I was really pleased to read your post and the replies this morning.
     
  12. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,720
    Male
    Bristol
    I noticed this was your first post Tomsnan and thought to say hello and welcome. It's good to see have made a connection already.
     
  13. PJ

    PJ Registered User

    Jan 26, 2017
    310
    Female
    Bristol
    Hi I have FTD dementia & go from being very aware of my changes to complete denial. I can’t quite believe dementia is cruel enough to allow the person who has it to notice its symptoms as they progress?
     
  14. Arthur ASCII

    Arthur ASCII Registered User

    Jan 17, 2019
    25
    Male
    Northamptonshire, UK
    It's a journey. You can't help but be aware of your direction of travel.

    I've started a journal to record my thoughts. Perhaps it'll help...
     
  15. Arthur ASCII

    Arthur ASCII Registered User

    Jan 17, 2019
    25
    Male
    Northamptonshire, UK
    @nitram was simply trying to help by suggesting that you search elsewhere on the site for some insights into your condition. I cannot see why you are so obviously annoyed.

    I've found useful info in every nook and cranny of this resource, and am glad of every response to my posts, even those that I don't necessarily agree with.
     
  16. DAELYNN62

    DAELYNN62 New member

    Jul 1, 2019
    2
    I haven't been officially diagnosed but I am starting to suspect I have dementia. Oddly enough, I am on both sides of the fence with a mother who is in assisted living with dementia, and now feeling like I am showing the signs, too, which my immediate family has noticed, so I dont think I'm being paranoid. I'm frightened and sad, and I dont know what to do. I feel like I'm hiding this terrible secret.

    I've sort of lost faith in doctors after my mom's experiences. At first they said my mom's deficit was "just normal aging," then "mild cognitive impairment". Now "moderate to profound dementia". I asked what type, and they said, "well it doesnt really matter because they all end up the same anyway." How very scientific - would anyone say that about heart disease? I realize Alzheimers is the most prevalent form, but she really didnt present that way, based on my experiences "baby sitting" Alzheimers patients.( When I worked in a doctors office, I'd sit with Alzheimers patients while their spouses were having appointments or procedures so they wouldn't wander off.) My moms symptoms were more like frontotemporal dementia. Her short term memory was surprisingly good. Her social behavior, empathy ,ability to reason and draw inferences, think abstractly, and follow conversations or even long sentences, deteriorated first..

    With me its episodic and short term memory, things I need to remember later, constantly misplacing things (although that is not exactly new) people's names, some word finding difficulty, and getting lost in familiar places, taking wrong turns. I cant keep things like phone numbers in my head long enough to dial them. My daughter tells me she has told me the same thing before, and is getting kind of impatient with me, like I dont care and am not listening to her. I cant face telling her that I'm just stupid now. I cant keep hiding this forever.
     
  17. DAELYNN62

    DAELYNN62 New member

    Jul 1, 2019
    2
    People say it depends on the degree of dementia or how far along you are. I wonder if that's true, because my mother pretty much denied it from the beginning to end, where as I feel like I'm aware of my deteriorating function and very concerned.

    Maybe it depends on what part of the brain it affects the most. I read once that there is a part of the brain that basically acts as a "reality checker," that evaluates ones thoughts or experiences to see if they are logical or normal. Perhaps in some people that gets damaged sooner than others. I could still be forgetting or making mistakes I'm not aware of, but Im definitely aware of many of them, and I know it is not normal. Anyway, you are not alone. Take care.
     
  18. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    hello @DAELYNN62
    a warm welcome to DTP
    sounds as though you have quite a bit on your plate right now
    might you just go have a chat with your GP as symptoms that can seem similar to dementia can be signs of other conditions eg stress, vitamin deficiency .. and the GP can do blood tests to check
    there's also Admiral Nurses who are there to support the carer, and even if there isn't one in your area, they have a Helpline to talk with a nurse, which may help you
    https://www.dementiauk.org/get-support/admiral-nursing/
     
  19. dbrilyant

    dbrilyant Registered User

    Sep 14, 2014
    22
    I was diagnosed with Altzeimer's three years ago and am very aware of gradually getting into increasingly bizarre difficulties. But I enjoy life and it is never boring! My husband, friends, church etc are incredibly supportive, so much so that I often don't notice!
     
  20. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    Hello @dbrilyant and welcome to Dementia Talking Point.
    Im sorry to hear of your diagnosis, but it sounds like you have a good support network and I love your positive attitude
     

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