1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Sara-Jane

    Sara-Jane Registered User

    Aug 31, 2005
    5
    Somerset
    My mum has a rare form of AD. Previous to this my grandad had AD and not a day goes by when i dont think to myself why me and my family we have never done a thing wrong but we seem to be being punished for something unknown. This illness is very very cruel and i am always trying to find out reasons for my mum and my grandad getting AD eg.... in my mums case did she get ill because she had early menopause and then subsequently went on HRT. There were reports back along that suggested HRT was related to AD. It is also very hard to think about my future, am i going to get it? With mum having it and my grandad which is my dads dad i have the genes coming from both sides and i dont want to end up not being able to do things for myself. I have 3 children and a doting partner and i dont like to think of them having to take care of me that is my job. I find it very difficult some days as i think everyone does but that doesnt help i very often feel that i am the only one in this position. I can talk to my family and friends and they listen but they dont seem to understand.
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Sara-Jane, so sorry to hear of your situation. BUT, think logically, grandads AD may (may) be age related......so Mum has a rare form, but it does not necessassarily mean you have it from both sides.
    I know it must be very frightning for you, but don't fear 'fear'.itself. Take a deep breath and try to step back.

    Carry on posting, I am sure someone on TP will have more experience than me and will be able perhaps to ease your mind a little. Love Connie
     
  3. Fran

    Fran Registered User

    Jul 8, 2005
    7
    Hampshire
    Why Me?

    Sara-Jane

    I know exactly how you feel. I think it's inevitable that you are going to worry about your own future and wellbeing. My Mum has advanced Alzheimers which (so far as I know) is age related but she was also on HRT and - until your message - I didn't know there was a possible link so that's given me food for thought!! Everytime I forget something simple, I do think Oh No, is it happening to me - it's human nature. All I can say is you're not alone, it's a dreaful illness and we are all going through it with you - not that that helps much but we need to be strong and help those that need us - as for the future, what will be, will be. Worrying won't change a thing - easy to say I know but hang on in there.
     
  4. Sara-Jane

    Sara-Jane Registered User

    Aug 31, 2005
    5
    Somerset
    Hrt

    Fran
    Thanks for your reply i know that im not the only one but that doesnt seem to help but its like you said i go shopping for a loaf of bread for instance and spend £40 and come home and still ive forgotten the loaf a feel like im losing mine sometimes!!!! As for the HRT thing there were reports back along saying that they thought there was a link between HRT and AD and since my mum has been ill that is what we have blamed. Alot of my female friends and family have been advised to go on HRT but are scared because of these reports i will try and find out if they proved anything. I will let you know if anything positive comes out of it.
    Thanks

    Sara-Jane
     
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Sara-Jane

    there are so many rumours and theories about links for Alzheimer's that we get scared about everything.

    I junked a perfectly good set of aluminium saucepans because of one scare, now discredited. Darn it, they were good ones, too!

    Jan began her dementia symptoms and, while in the early stages, also started HRT [progesterone pessaries as she had a blood clot in her eye in the 1960s and was thus kept off oestrogen]. Don't think we can therefore include HRT as a cause for her dementia.

    As her symptoms began just after she had a multitude of jabs to go to Kenya, I always blame the mixture of jabs [in same sort of way as Gulf War Syndrome]. I'm sure that wasn't the reason.

    Might have been her smoking.

    Might have been her drinking.

    Neither to excess.

    or food.

    or proximity to Port Talbot steelworks pollution in her youth.

    or too much long haul air travel

    or pollution of London air

    or...

    or...

    Point is, no-one knows what causes Alzheimer's and if we steer clear of every possible causal factor, we may as well sit in a tub of chemicals in Tate Modern.
    [see, I've forgotten the name of the so-called artist who does that rubbish - doesn't mean I have dementia!]

    Everything in moderation, take things Norman-style - day by day.

    You WILL be distracted by your worries, and thus forget simple things. It happens, but only seems to take on unwarranted significance when we have seen someone with dementia.
     
  6. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    What about men who get Alzheimers? Don't think we can lay the blame on HRT, can we?

    Ruthie
     
  7. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear sara-jane, please don't include HRT in the AD senario. I took HRT (on medical grounds & with advice) for 18 years. I am now 67, and caring for dear Lionel, who, to my knowledge has never taken HRT.
    Have to agree with Ruthie, what about the men.

    As Bruce says : probrable causes : many.
    proven causes : I rest my case.........Regards, Conni
     
  8. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    I know how you feel...

    Sara-Jane,

    I know how you feel and I too have read about links between HRT and dementia, both positive and negative. I suffered for the last 2 years with low testosterone, levels of an 87yr old woman the doctor said, and that freaked me out because I wonder if hormones are the link (my sister also has had the same problem).

    I'm not going to offer you any sensible advice because if you are like me, it doesn't matter how many people reassure you, you are just at the stage where you can't stop thinking about how this horrible thing could have been prevented and whether you too are going to get it if you don't somehow work out how to stop it. I think it is a natural reaction if you can take any comfort from that...

    The only good news is that it may pass, I don't know whether its because Dad's getting to the point where I have no choice but to start giving up hope that some miracle can save him (I hate saying that and its not that the hope has died, I feel like I'm betraying him and I just can't seem to stop hoping, but my hope is just a whisper now that I can almost ignore) or whether its because its been happening for so long and my brain says I just can't keep thinking about this in this way.

    With that kind of thinking disappearing I'm finally (after 5 long years) coming to terms with all of this and am no longer suffering insomnia and stress like I was before. Nevertheless I'm not going to say stop doing it, because if you are like me then you can't and fighting it is even more exhausting and frustrating because it makes you feel like an obsessive idiot at times. Just take deep breaths and maybe use my favourite saying that I repeat to myself when things are bad 'This too in time, will pass'.

    By the way, can you tell me about the symptoms your Mum has? I tried looking it up but as you say there is very little info on her type of alzheimers and as Dad's AD is peculiar compared to normal symptoms I'm all ears to variants on the disease.

    Nat (aka jc141265)
     

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