What does the person with dementia feel.

Discussion in 'Recently diagnosed and early stages of dementia' started by deannabyrne, Jan 11, 2016.

  1. deannabyrne

    deannabyrne Registered User

    Jan 11, 2016
    My Dad was diagnosed 4 years ago.
    He is 75 and as healthy as a horse.
    Very active his entire life and has been the light of my son's life since he's been form.

    But the past few months I have noticed his train of thought is always interrupted, he cannot find the words for common items etc.

    I wonder what he feels.

    Is he mad at the world, scared, does he know what is to come?

    Should I ask him and talk to him about the disease or would that be like rubbing salt into the wound? :mad:

    I am so mad at this dreadful degrading disease.
    To take a healthy active man and turn him into a dependant aging person is just so unfair and so difficult to watch happen.
    You would think at this day and age there would be a cure or at least better meds available to stop the progression better than there are now.

    Sorry I need to vent. I am just so angry.
  2. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    I think this is a question a lot of us ask ourselves every day.

    If we could be in their world just for a day and experience how it feels, we would probably be in a better position to help and care.

    As for talking to him about it, I think it depends whether he acknowledges something is wrong.

    It is very unfair and you have every right to be angry about it, so feel free to vent it here, because we all need an outlet for our frustrations.
  3. creativesarah

    creativesarah Registered User

    Some days I feel as though things are slowly slipping out of my grasp
    other days I feel fairly OK
    Some days my head feels as though I am wading through liquid concrete
    other days like strolling through ready brek!

    I read the book Still Alice and found that really helpful I felt less frightened

    Also Elizabeth is missing is a great insight too

    No 2 dementia sufferers are alike.

    You could try asking him how it feels I didnt mind being asked but he may or maynot be pleased!
  4. chick1962

    chick1962 Registered User

    Apr 3, 2014
    near Folkestone
    My husband is aware of his Az and speaks openly about it to myself and friends. He gets frustrated if he looses the conversation thread or struggles to find the right word . He also has days where he says the fog is descending on his brain and everything is muddled and far far away . He is in his 6th year but we can still talk about what is happening and have plenty of good days. The night time is very different though with confusion and sun downing and getting up loads. He has some recollection of this but not always . Big hugs to you xxx

    Sent from my iPhone using Talking Point
  5. martinjohn

    martinjohn Registered User

    Jan 2, 2012
    alzheimers not just a disease for the person diagnosed with it but also those close to them how do we feel guilty we can no longer be a husband or father or grandad we can no longer provide for our loved ones we try to blend in as we did but no longer possible we don't have the skills we lose a bit more of ourselves day by day talk to us about it yes even if just a little stays in our head its better than not talking about things angry yes you can get angry as someone with alzheimers I get very angry sometimes I don't know why I hate this disease for what it has done to my family I was diagnosed at 56 iam now 61 I am having a good day today but I know come tomorrow I will have forgotten I have replied to you the strain on a family caring for someone is immense to watch someone you love become someone you don't know my wife said to me that my personality has changed so much its scary I wish sometimes I did not know as much about the disease as I do but on the other hand when I am capable I can use that knowledge to my advantage and talk to people who really have a problem of understanding alzheimers my son and I were best mates and father and son he does not acknowledge my alzheimers but that's ok for now but one day I will not be able to be his dad as I am becoming someone else not even I know strange but true you can only be there for us but don't ever forget that person mum dad gran grandad brother treat them as you always have try not to let our disease become your disease sorry to go on I don't get out much in case I get lost love to you all martin
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    Sometimes I used to talk to my Ma about how things were and how she felt. We didn't talk about dementia or memory loss in particular because she was in big denial 99% of the time but when she needed to talk we would just speak about 'how things are today'. She used to tell me she was sometimes very frightened, that she didn't understand things that she used to, that the world seemed a bit upside down, that it was all scary.
  7. nitram

    nitram Registered User

    Apr 6, 2011
    North Manchester
    "What does the person with dementia feel?"

    No two people are alike but for an insight into how it might feel watch this video
    >>>Dementia from the inside<<<
  8. Dazmum

    Dazmum Registered User

    No two people are alike, but both Creative Sarah and also Norrms post's are very eloquent on how they feel.

    It makes me angry and also very sad for my mum, especially when she is anxious about where she is and what she should do next.
  9. Sue J

    Sue J Registered User

    Dec 9, 2009
    Martin all you write is so true and it is so hard, I understand all you say and others too. I too am having a 'good day' today and can't even imagine that it may change comp0letely tomorrow, such is the difference in my ability to think and function. I hate being and feeling a burden to others. Dazmum I agree I watch it on the outside with my friend and hate it when she is so lost that she can't think what to do at all.
  10. Beetroot

    Beetroot Registered User

    Aug 19, 2015
    My mother gets frustrated that she can't get her head round doing something she's always done like washing up. She used to love gardening and will still try and help, but she gets in such a muddle sometimes, she just gives up. Sometimes she will lean her head on my shoulder and say "It's hopeless, it's really hopeless." Or say "Ron, (my late father) why don't you just come and get me?" "I think I'm fine, but I know I'm not." is one of her favourite sayings.

    When she's having an anxious spell - she looks like a rabbit caught in headlines and stands there with her hand shaking. The only thing to do then is to hold her hands to calm her and gently sit her down with her book. Thankfully, she still loves reading even though she has difficulty following a plot; she says she's never bored if she has a book to hand. She tells me she feels safe with me and describes her bedroom as her "safe haven"; she says she couldn't live alone. "I wouldn't know what to do."

    She likes to do housework to make her "not feel useless", but the thought of doing something as simple as washing up makes her almost panic. She says she can't get her head round it - "my brain is stopping me."
  11. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    Well I feel fine

    I don’t think dementia is any different than a lot of other medical problems , for instance majority of people know when they have Cancer , or Kidney failure or Losing their Sight well unless a person suffers a sudden Stroke or a severe Head injury , under normal circumstances they will know they have dementia because it’s a slow progressive illness , after a while a person may find it difficult to verbally converse or find words , well I was diagnosed with Alzheimer’s at age of 57 over 16 years ago and although I myself find it difficult to get into a conversation it’s not because I can’t find the words it’s because they seem to get lost between my brain and my lips , hence I can converse using the computer majority of younger people with dementia have very active brains best way to go forward is to find a way around the problem { obviously i'm sixteen years older now thats a majior factor }
  12. 1mindy

    1mindy Registered User

    Jul 21, 2015
    My OH still does not remember his diagnosis. " Why did not one tell me " . He still talks on and on about what he is going to do , but quiet honestly can do nothing of any significance ( which is fine ) but does he believe he can ?. I have no idea how he feels, if he ever realises that nothing that he says makes any sense ,and he can talk for hours and hours. Wish I knew .
  13. trigger

    trigger Account on hold

    Aug 25, 2009
    Plymstock Devon
    I suggest we listen to those who have a diagnoses of dementia they have the inside knowledge
  14. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    It gives us so much insight hearing how people with dementia feel and think. So few are able to admit that there is anything wrong with them. My husband is in total denial. Well done to those brave people who have it for posting here and trying to explain their world. I hope it makes me understand and cope better when I am with my husband.
  15. Sue J

    Sue J Registered User

    Dec 9, 2009
    I think what people don't realise about why people are in 'denial' is because it is not their 'mind' that there is a problem with. it is a problem of the 'brain', the 'mind' cannot do anything to alter the problem of the affliction of 'brain'. I know I have a problem with my brain because I can no longer do what I once so easily did, not because I am choosing not to but because something is affecting my brain's functional ability. It is my 'mind' that enables me to describe it when my brain symptoms abate enough to allow me to do so. It gets harder with disease progression to identify/differentiate between the disease and the person - it is just as hard for the sufferer as for close care givers, which is why it is so frightening to no longer be able to find oneself in the midst of a voracious disease. Fresh onslaughts of disease activity erase immediate memory but my 'mind' knows I have a disease that does this, I put strategies in place to try and help me to function but it can't stop the disease.

    It may be an 'invisible' disease but the effects are far from 'invisible' only to those that don't want to or unable to see.
  16. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    That's a very helpful post Sue.

    I think it's already clear from the responses that 'What does a person with dementia feel?' can't really be answered for the reason explained earlier.

    As a carer I've tried to concentrate on ensuring that Sue feels as happy/contented as possible for of much as the time as she can. But so much depends on the point the person has reached (as well as all the other variables referred to). Currently Sue is unable to do very much for herself at all (and she's been like this for a few years) but a lot of the time she clearly isn't having any bad feelings. She wasn't always like this and the worst time in my life so far was watching the mercifully short period when she was paranoid, tormented and aggressive so I know how awful that was for us and will be for others. But I also think, and know from TP, that we are not the only 'lucky' ones in that the worst times do not necessarily last. I hope this may bring some small comfort to those reading this thread who are currently overwhelmed by the dreadful stuff
  17. Sue J

    Sue J Registered User

    Dec 9, 2009
    It is very comforting to me Stanleypj to read that Sue is happy and content and that the tormented times are in the past.:) I do know each time I get a bad phase that it will and does pass the thought that the bad phases will be a thing of the past is one I long for. I struggle with the ongoing acceptance of a condition that really is a degenerative one and in getting a correct diagnosis in order to get my needs supported whilst I still can as I hope to reach the stage where the bad phases are gone but I am likely to be far less able, and I am quite compromised now, in looking after myself - maybe why I rant so much. Apologies I don't mean to cause distress.:eek:
  18. gringo

    gringo Registered User

    Feb 1, 2012
    It’s not this straightforward.
    Some people with dementia are all too aware of their situation, and we are fortunate to have them posting here, telling us what it is like ‘from the inside’. But they can only tell us what it’s like for them.
    Others, like my wife, and as far as I can see all the other inmates of her CH., are completely unaware that, apart maybe from a poor memory, there is anything wrong with them at all. They have absolutely no insight into their condition. We don’t see posts from this group because they are not able to use a computer. What it’s like for them can only be guessed at. They are not able to tell us. I spend much of my time trying to understand what living in this ‘other world’ may be like. I do know that, at times, it can be a very frightening place.
    But it’s like the old Indian story of the blind men trying to describe an elephant .
  19. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Sue, you don't cause distress. It's so good to read of your insight-it helps. You write so clearly so I'm hoping that you are having a good phase at this time.

    Pete (when he was being told repeatedly that he didn't have dementia) used to say he felt 'lost' and 'lonely' even when he was surrounded by others. He looked lost definitely, it breaks my heart to think of how despondent he must of felt.

    Stanley, I'm also glad that your Sue is less tormented.


    Lyn T
  20. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    Sue, I don't think you've ever posted in a way that could cause offence to anyone. In fact. it's very helpful to me, and I'm sure, many, many others that, despite the fluctuations, you are able to post so coherently about your own journey. And, as we know, there are other TP members who are also able to post in this way.

    I appreciate gringo's point that there are many people with dementia who have no insight into their condition - I doubt whether Sue has now and when she did have it may well have contributed to her distress.

    At least, on TP, there are daily examples of the different ways in which the condition affects people so we can all see that there are no simple answers to questions that are often posed about how people with dementia think, feel and behave.

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