1. zed

    zed Registered User

    Jul 25, 2005
    76
    London
    My 58 year old mother has frontal lobe dementia (pick's disease). It is possible that it is genetic. her mother also had dementia, it was never properly diagnosed (it was called senile dementia, with no further explanation). It is very likely that what my grandmother had was not the same as my mum; she lived until she was 85 which is highly unusual for someone with Pick's, and she had a number of strokes, which suggests vascular dementia. therefore It seems it is probably just a coincidence that my mother and granmother have/had dementia.

    But of course, I worry that it is genetic, and that I will get it to. My mum's sisters are both older than her, and so no signs, so it is highly unlikley that they will develop it, or they would have showed some signs by now, as Pick's tends to develop in your 50's or 60's. The way they have talked to me about my risk of getting it has been so incredibly tactless. One aunt said to me "it could be you next". The both keep telling me that many members of our family had dementia. (my mum's family emigrated to the UK so I didn't meet any of my great aunts etc). Today one aunt told me that my mum's cousin "definitely died of dementia in his early 60s". This really bloody scared me, because if he had dementia in his 60s and died of it in his 60s, then it could very well have been Pick's, as the age range would make sense. So I looked up on a family tree that another family member gave me, and it says there he died at 75! That is a big difference! In the country he lived in that is a normal age for a man to die, and it makes it much less likely that it he had Pick's.

    So I asked the other aunt about that counsin's parents. She said that my great aunt "definitely had dementia". I probed her a bit, and she said my great aunt had "nervous problems" all her life, and "lost her mind". She was 76 when she died, and being born in 1901 and living in the country she lived in, again that was a normal age. So again highly unlikely it was Pick's. It seems to me both my aunts seem to describe any mental health problems as dementia. My aunt said my great aunt had dementia, yet then said she had it all her life, which doesn't make any sense.

    ooohhhh, I am so fed up of them stirring and exaggerating. I don't understand why they can't see that are upsetting me. Sorry to go on!
     
  2. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi zed,

    I suppose there is a chance that your aunts are ruminating over the fact that they do not have dementia. Their own fear that they might get it may lead them to explore that possibility by directing their statements at you instead. Does that make any sense? Probably not, maybe I shouldn't always try to see a reason for people's tactless remarks and see them just as they are - tactless. Still, then again I've made a few bloomers myself over the years so it could be that they really just do not realise that it upsets you. Have you tried telling them?

    Their understanding of dementia seems to be rather vague but it is only relatively recently that we've started to understand the differing types of illnesses that affect the mind, and to be able to discuss them openly. In past generations it was a subject of shame, so I guess we can't blame them for not knowing the differences.

    I can understand your fears but it looks as if you've researched their misguided information and ended up with an opposite, and more positive common-sense view, so that's a good thing! If you do not discuss possible genetic links with them from now on perhaps they will stop too. You could look on it as their problem. :eek: ;) :rolleyes:

    Best wishes,
     
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Am i going to get it

    With no intention to be patronising, for I am only speaking from my own experience and it is entirely possible that this experience was unique to myself...
    I found Zed that for the first 4 or so years of Dad's disease I was extremely peturbed about the idea that Dad's disease could be heriditary, sometimes I was obsessed by it even though at the same time I really didn't want to think about it. I turned myself inside out worrying about it, everytime I had some vague symptom I saw it as a sign that I was destined for the same fate, every time I noticed that Dad and I had similarities in personalities I saw it as a death sentence.

    It would have been during this time for me that comments like those your aunts make would particularly drive me crazy. Because with Dad I knew both sides of the argument so well, evidence in his past that could suggest the disease was heriditary and other evidence that suggested otherwise. For me this constant mulling over 'why did dad get this disease', 'how do I know I won't get this disease','why did dad get this disease', 'how do I know I won't get this disease','why did dad get this disease', 'how do I know I won't get this disease' almost sent me crazy.

    For some reason now, the obsession has stopped. I have come to accept somewhat Dad's disease and I don't know why, but I no longer worry about the future, if I get it, I'll deal with that then (and immediately take up smoking again at that point! :p hehehe)but for now I will just enjoy today. I think venting a lot on this forum has helped me to get to this stage.

    So regarding your aunts comments, vent away about it here, and you might find that sometime soon, this sort of thing doesn't even concern you anymore.

    Best wishes
     
  4. JoJo

    JoJo Registered User

    Sep 25, 2003
    38
    Shropshire
    Hi Zed

    My dad (61) also has Pick's Disease and his aunt (paternal side) was diagnosed with dementia in her 60s (or maybe early 70s) and has since died.

    The same thought plays on my mind every now and again but I try not to give it much brain space! My father's family also brings a history of depression with it, in case dementia wasn't enough! There was also an 'odd' uncle of his - you know the black sheep of the family who sounds like he had classic Pick's symptoms now we look back.

    My Dad's CPN has said one case of dementia is sad, two is unfortunate and three is a tragedy. Only after more than three family members are diagnosed with dementia would they consider a familial link.

    Don't know whether that helps but at least you know you are not alone with those thoughts rumbling around your head.

    But it this way - I don't feel guilty about my two glasses of wine tonight because if I follow the family course my life may be way different by the time I get to 61.

    JoJo
     
  5. zed

    zed Registered User

    Jul 25, 2005
    76
    London
    Thank you all for your replies. Hazel, I suspect you are right about my aunts. One of them in particular is very frightened for herself I think, and this is her way of dealing with it.

    Nat, I am glad you have got to the stage of not worrying about it. My sister really doesn't worry, her attitude is that it is unlikely, and there is nothing we can do about it apart from try to keep healthy.

    Jojo, thanks for sharing your experience with me.

    I spoke to my aunt again today, and she bought up this great-aunt again, and mentioned some of the symptoms. From what she said it sounded like my great aunt had severe phobias and obsessive compulsive disorder, which we all know is nothing to do with dementia!

    I have now my mum’s best friend doing the complete opposite. She is trying to make me feel better, but she says to me “it is not going to happen, it is not hereditary and you will not get it”. I don’t really find that a useful attitude, as I have to face up to the fact that it could be herediaty, but that is a very small chance. I don’t find it helpful be in complete denial! I know she means well.

    I am sure I will get to a place where I stop worrying about it soon. When mum was first diagnosed, I felt very angry about it for a long time, but I have got over that now. Mum and I have always had a problematic relationship, and I only saw her or spoke to her every couple of months. So I was angry that I was being dragged back into mum’s day to day life in order to help her, instead of being allowed to keep my distance. But now I don’t feel angry.
     

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