Can you help me to understand?

Discussion in 'Younger people with dementia and their carers' started by Suzy1, Nov 6, 2005.

  1. Suzy1

    Suzy1 Registered User

    Hello everyone.

    I wonder if anyone can help me to understand somthing.

    My sister was diagnosed with an "Alzheimers type" dementia when she was 51,she is now 56. Although I can see in some ways that she is getting worse(bathroom habits etc) It seems to me that from the beginning of her illness,she would never have had enough about her to come to a board like this and say "Help I am having memory problems." I hope that doesnt come across as me being mean,it's just that I have come across(on here and other boards,and even tv documentry's) where there are people with this type of illness and they will say things like. "oh yes I need to take this medication or that one because I wont eat other wise" or someone will sit at a piano and play some lovely music and anounce that "unfortunaly I will have forgotten I did that in a few minuets" or, "oh I cant tie my shoe laces properly anymore"

    What I am trying to say(and probably badly) is that my sister would not be even capable of even realising that she can no longer do those things. Her house is full of wonderful paintings that she has done over the years,but she just doesnt seem to know what a paint brush is any more,let alone know what to do with it . And yet I can take her out to look around an antiques market or similer and she will talk to me about things that she sees. One day she saw a book that she realy liked,so we bought it. When she got home it turned out that she had the exact same book(I didnt know obviously) Now, that I can understand because she was remembering the feeling of enjoying the book and that is why she wanted it although she had forgotten that she had it. But,most of the time she has to be prompted to do almost everything. A good example is opening the car door to get out,she got so confused one day that when she was prompted to open the car door to get out,she held up a bag that was at her feet and tried to pass it through the closed window.

    I am sorry for waffling on. I know this disease does effect people differently but it just seems to me that most people have had a very graduel decline,where as I feel that with my sister it was all happening at the word go.

    Sorry,waffle over.
  2. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Me too...

    Suzy your post came at the most interesting time for me, because just seconds before I read it I was wondering about the differences in dementias, and wondering if Early Onset dementia is in some ways far more agressive than other dementias, and if sometimes it is, are there others who have early onset dementias that are not so?

    The reason I was wondering was because I was just writing to another member who's mother has early onset and I was describing my message went along the lines of:

    I've often thought when I read the posts from those suffering, I wonder if that was how Dad was feeling/thinking, but like you, by the time he got the diagnosis (and the doctors said it was caught very very early) I really don't think he was capable of expressing himself so clearly. For him, although he was aware of what was happening and was very frustrated and upset by it, he didn't discuss it and although that may have been because he didn't want to, I think it was more because he was unable to. Thus my feeling of loss, because I never could have a proper conversation with him, know him, since 6 years ago....and as I had been busy with my own life up till the diagnosis (I was 24 then) I feel I don't even know who my father is/was.
    Last but not least, I see the people in his home, and all of the older residents who have Alzheimers or other dementias can still talk. The younger ones cannot, the younger ones seem far more 'demented'...however this could be because the younger ones live longer with the disease, and the younger ones are often kept out of the homes longer...So like you I will be interested to hear what the comments to this thread are....
    Your description,
    very much described my own father's confusion about the world that was like you say, there from day one of the diagnosis.
  3. afghan

    afghan Registered User

    Nov 2, 2005
    Who understands this dreadfull illness?

    Have just read you post. My wife became ill when she was 44 years old, diagnosed with an Alzheimer's related illness at 47.5, now 55 and in an Elderly Mentally Infirm home.
    This illness seems one in which the sufferer does not as a rule recognise what is happening to them and therefore would not/ could not accept there is something wrong. Ruth would do all sorts of weird things but would never accept that it had been her. This was very frustrating, especially as I had no conception as to what was wrong with her at this time.
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I've thought about this a lot.

    My theory:

    basically the brain controls everything we do, everything we think, and most things we feel.

    We see the world, in effect through the camera of our brain [camera = eyes + interpreting mechanism];

    we sense the world through our brain [ears, nose, taste buds + interpreting mechanism];

    we feel the world through our brain [sense of touch plus interpreting mechanism];

    we remember the world [brain's memory plus brain's retrieval mechanism];


    If any of the interpreting or retrieval mechanisms gets damaged, then the brain still tries to figure out what's what. It still thinks things are okay, because it only interprets what is coming in, not what is not coming in, not what is coming in incorrectly.

    I've seen supercomputers go into compute loops because of similar things.

    Far as the computer is concerned - or the person - it is business as usual.

    That's why, if you tell the person there is something wrong wth them, they won't recognise it. Their normailty is intact because they don't know what has gone missing.
  5. Suzy1

    Suzy1 Registered User

    #5 Suzy1, Nov 7, 2005
    Last edited: Nov 7, 2005
    Thankyou to all that replied to my post.

    Nat... I think you have a point about the younger a person is when they get the disease that the symptoms seem to progress at a faster rate. My Mother in law had Alzheimers(she was in her seventies)The first thing that we remember her doing that was unusuel for her, was to somehow lock the keys of the filing cabinet "inside" the cabinet. She realised what she had done and phoned us up to tell us about it. She would do odd things like that from time to time but she still managed for quite a while to carry on with the ordinary day to day things like cooking without much of a problem. Thats how I remember things anyway. And yet like I mentioned before,it seems to me like my sister stopped being capable of doing many things very quickly.

    Tony... I think anyone of us would find it difficult and frustrating if we were in your shoes. Lets face it, would any of us even consider the possability that the person showing all these strange symptoms,at the age of 44 was suffering Dementia? Maybe if it was an illness that was already in the family,but sometimes it just seems to come out of nowhere. As far as I know there has not been anyone else in our family to have this type of illness. (And I cant help wondering if I am next)

    Brucie... Thankyou, your illustration using a computer made a lot of sense to me.
  6. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Another thing I think makes early onset seem more agressive is the shock involved. You might kind of expect an elderly relative to get dementia, but you never expect a person so young to lose all these capabilities. You keep looking at them thinking, but they should be still working, or they should be out enjoying their early retirement years....I don't think though that this shock alone explains it, it does seem to me, to get extremely nasty early on, its not the slow drifting into confusion you expect after reading the descriptions of Alzheimers and seeing portrayals on TV.
  7. Suzy1

    Suzy1 Registered User

    Exactly Nat, I could not have put it better.
  8. jc141265

    jc141265 Registered User

    Sep 16, 2005
    A metaphor

    "Somebody for gods sake, stop this rollercoaster now!" The feeling of nausea, terror and being just plain scared and worried that you or others are going to get hurt, when you are on a rollercoaster that is more scare than fun, and you are starting to feel faint from all the twists, turns, jolts, shakes, ups and downs, and its all happening so fast, you are losing your breath. :(
  9. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Brucie, very well put. Nat, thats a very good description of a dementia carers lot! Love She. XX
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Nat

    quite bizarre, because the thought of being on a sort of demonic roller coaster, all scares and no fun, had crossed my mind as well.

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