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What does dementia feel like?

Discussion in 'I have dementia' started by BenJ1, Apr 13, 2017.

  1. BenJ1

    BenJ1 Registered User

    Apr 13, 2017
    Hi Everyone,

    I have had family members who have had dementia (2 grandparents) but I never felt confident enough to ask them how it actually feels to have dementia. I feel this open forum is the best place to ask as people here are in a position to answer it.

    My question is: What does dementia feel like to you? How does it effect you on a day to day bases? What do you struggle with? What do you think people could do more to help you?

    I would just like to gain a more in depth insight to how it felt for my family members who had dementia.

    I really appreciate everyone who is willing to give me any sort of answer. Have a good day.

    Kind regards,
  2. creativesarah

    creativesarah Registered User

    To me it feels like my head is filled with stuff some days porridge sometimes​ cement at the moment I am somewhere between the two. My memory is very patchy no two days the same. last week i got lost which is bewildering i will think of some other things to tell you

    Sent from my Moto G (4) using Talking Point mobile app
  3. BenJ1

    BenJ1 Registered User

    Apr 13, 2017
    Thank you so much for the reply Sarah! This is really helpful.
  4. Sue J

    Sue J Registered User

    Dec 9, 2009
    Hi Benji

    It's hard to describe feeling confused a lot of the time but in a strange way you can get used to it because you have to. It helps when people are patient and make small gestures that can make all the difference to a difficult day. It helps me when I tell my HH I can't find something that I want, she goes on a hunt and usually manages to find it for me.:) even though I have already looked in the same place 3 x over!!

    Best wishes
  5. BenJ1

    BenJ1 Registered User

    Apr 13, 2017
    Thank you Sue! Your reply is much appreciated. :)
  6. Quakeroat1

    Quakeroat1 Registered User

    Jan 1, 2017
    It's like I felt when I did 2 long haul flights ...but permanent jet lag
  7. Zana

    Zana Registered User

    May 12, 2016
    my husband says its often like waking from a dream and only remembering bits , the more he tries to grab hold of the bits of memory the more they fade and evade his grasp.

    The only thing is he realises this is his waking world and not just a dream. It frustrates and confuses him to know how to fix the car but be unable to remember the word for the parasols or what day of the week it is or remember to eat lunch if Im not there to remind him.
  8. creativesarah

    creativesarah Registered User

    Its a bit like getting on a roundabout in a childrens playground and going round and round but when you stop you dom't know what year you have got off

    It's like being a plant thats been reduced at a garden centre, a feeling of diminishment
    hoping that you wont get thrown on the scrap heap and that someone kind and understanding will buy you and be kind a patient with you (I thought this one up while I was at a DIY store yesterday) I bought some snapdragons 50p a tray!!
  9. Rosnpton

    Rosnpton Registered User

    Mar 19, 2017
    Thanks for that anomaly (is that correct?)
    Reading these responses will help me try and understand mums az and dads early onset dementia a bit more. I know they are ill, and if they had,for example, Chicken pox, I would see the spots and understand the path the illness follows. Unfortunately, this illness doesn't follow any pre determined path,and as a carer, I think I have something sussessed and the situation changes.
    Thank you all for being able to tell it like it is from your own experiences.
    Wishing you all a happy Easter

  10. john51

    john51 Registered User

    This is an interesting question. If I tried to answer at my worst times I wouldn't be able even to start. It's only as things improve I know I've had a bad time. As they improve I feel as if a fog is lifting. That I'm not lost anymore. I can think for myself and start to work things out. So I suppose that the bad times must be the opposite. As if I'm living in a fog; that I am lost and unable to work things out. There are times when like Nitram says you feel like you are on the reduced shelf and hope you won't be thrown out. I well know the feeling when people treat me like an idiot who can't work things out. I stand feeling the depression come down and the tears well up. Working hard to stay silent rather than let the anger escape. I know too the feeling of helplessness when I have wandered and don't know where I am and the feeling of desolation when those I hope will help send me places that are even more wrong.

    Sent from my SM-A310F using Talking Point mobile app
  11. creativesarah

    creativesarah Registered User

  12. Quakeroat1

    Quakeroat1 Registered User

    Jan 1, 2017
    Today I was told something that made me very angry. Before dementia I would have been better at saying to myself this is not important but today I reacted in an aggressive way to protect someone I love. There was absolutely no need for me to get riled but I did get riled and so that's how I felt.
    Perhaps in future I must just hear the things that don't rile me God knows why this has been my reaction.
  13. BenJ1

    BenJ1 Registered User

    Apr 13, 2017
    I really appreciate everyone posting their feelings here. Hope everyone has a good day.
  14. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    Thank you

    Thank you to all of you who tried to explain what it feels like. I am looking after my OH who has Alzheimer's and reading your posts will hopefully help me to understand what he is going through so I am able to care for him better.
  15. IslandEternal

    IslandEternal Account Closed

    Apr 19, 2017
    It is nice to read your informative comments. Just wanna ask too...What causes Dementia? Does depression one of the reasons?..Your comments is highly appreciated. Thank you
  16. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
  17. Tiny1

    Tiny1 Registered User

    Apr 26, 2017
    Than you so much I will download it please delete if I'm not supposed to write the following.

    I just need someone to talk to I have got vascular dementia and it's getting worse, no one asks how you are feeling you are just left to deal with it. I have got a wonderful husband and family. I feel all the happiness inside of me has gone and I can't find it I also feel down all the time. I just can't cope that I will forget my family who I love dearly. I definitely know I'm getting worse. How do other dementia people cope with this I just dread the day it happens. Thank you for listening.

    Sent from my iPhone using Talking Point
  18. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    I hurt for you, Tiny1.

    If it's not too frightening, or distressing for you, how about you show your loved ones this message? Might that help all of you to come together for a bit of closeness and just enjoy each other? Just a thought.

    There's a question I'd love to ask, but I don't know if I dare, yet...I'll wait a while to see if there's any more discussion. I'm the widow of someone who had some form of dementia but was never formally diagnosed.
  19. Tiny1

    Tiny1 Registered User

    Apr 26, 2017
    Thank u so much for your message I have got someone coming to have a chat with me Tuesday hopefully they will give me a few answers. Please ask me your question I really don't mind answering for you.

    Sent from my iPhone using Talking Point

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