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  1. #16
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    Sep 2012
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    Hi there,

    This is kind of difficult so please bear with me. We have familial alzheimers in my mothers side. It was all confirmed and the like while she was alive. She died 10 years ago and we have all pretty much ignored the implications, just getting on with life and not worrying about the future. Problem is that afew weeks ago my sister turned the age at which Mum became ill.....and to be honest, I am struggling. I have no one to talk to about it as my mums family have all but deserted us. I cant talk to my sister about it because I know that she is terrified and if she knows what's going on in my head, it will make it even harder for her. All my friends turned tail and bolted a long time ago and my partner doesn't need to hear the things that are going through my head!! I was hoping that there may be someone around that can understand some of how I feel and maybe lend a friendly ear?? Or at least point me in the direction of someone that can? Thanks

  2. #17
    Registered User
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    Sep 2009
    Location
    Lowestoft, Suffolk
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    74
    Hi and sorry for not replying before now. I really can understand how you're feeling. It is bad enough thinking that it could happen to us, but to think that it could happen to our siblings/cousins etc. is just horrible. How is your sister?

    Personally, I freak out a little bit whenever I lose something (often as I'm not an organised person!) or get back from Tesco and realise that I forgot to get something that I needed. I think that we become hyper-aware of these kinds of things and no doubt notice them in others that might be at risk. Mostly these things are normal and I used to lose things and forget things when I was in my twenties!

    If you want to send me a private message, please do. I'm happy to give you my phone number if you want to talk.

    I would really recommend seeing a counsellor as it is good to be able to talk about your feelings with a neutral person. I know that my husband finds it very difficult when I talk about Alzheimer's and I can understand that, it is difficult for him as he doesn't want to think of it happening to me. I saw a great counsellor and it really helped me.

  3. #18
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    Dec 2012
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    2

    fad

    Hi. My husband has F.A.D.He is 53 now and is in hospital.His mother and sister were both 47 when they died and also his uncle and two cousins.I was very interested in the thread as it is rare to read about other families condition.It has been a very difficcult few years for everyone.My husband had an awful time at work and then became very hostile towards the children.He had to leave the family home and go into a care home and a few months later was taken in handcuffs to hospital,he is now on a ward for dementia sufferers with challenging behaviours.I still hope he can come back home.I hate to think of my three children contracting this awful disease.I am at present awaiting for blood tests to provide a genetic marker in the hope that it will be helpful to the children.I dont know of any support groups or any research going on.I would appreciate any information.There is an article in Novembers dementia monthly about the handcuffing incident.

  4. #19
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    Sep 2009
    Location
    Lowestoft, Suffolk
    Posts
    74
    Hi there! Thanks for posting and sharing your story. I'm really sorry that you too have been affected by FAD and I truly do understand the worry that you have about your children having the possibility of inheriting the gene...if I think about the possibility of my daughter getting it if I am unlucky enough to inherit the dodgy gene, it takes all of my strength not to have a full on panic attack!

    There is a support group but it only meets once a year and the next meeting is on Saturday 9th February. I'll me going to it with some other members of my family and a friend that I met through this forum is also going with some of her family.

    I'm in a hotel at the moment as I'm on a training course, so I'm just going to charge my phone for a while and then I'll reply with some further information.

    If you would like me to forward the FAD support group email to you, just send me your email address in a private message - I can't see the whole screen on my phone but I think if you click on my name it should give you the option to send me a private message.

    Well done for posting on here, I know that it's not an easy thing to do but I have benefited so much from speaking with other people affected by FAD - it is so good to know that you are not alone and that there are other people who understand how you feel.

    Sophie x

  5. #20
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    Join Date
    Dec 2012
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    2

    fad

    Thanks for getting back so quickly.Il send you my e mail address on Sunday.Its a shame support group in London as i live in Northumberland but Im sure i could get there.Thanks again.

  6. #21
    New User
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    Dec 2012
    Location
    Edinburgh, Scotland
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    2
    Hello all. I would be very interested in attending the event in February. I'm a teacher and luckily it falls during my mid-term break so I should be able to make it down - is there a procedure through which I have to book? If someone could let me know that would be fantastic.

    I am currently in the process of deciding whether or not to have 'the test' to see if I inherited the gene. Having just got married in October it is proving a more difficult decision that I anticipated, but I would love to be more involved with the research and hear about developments.

  7. #22
    Registered User
    Join Date
    Jan 2010
    Posts
    31

    Hi

    Hello. Looks like I'm joining the FAD club too (not that I want to). Mum has been diganosed age 53. Her brother has it aged 55. Her mother and two aunts all had early onset too (all by the time they were 50).

    I'm waiting to see a geneticist and have counselling but I'm not sure what I will decide to do at the moment as I'm 31 and have three young children.

    I'm keeping it together for those around me but am feeling unbelievably upset and anxious about everything. X

  8. #23
    Registered User
    Join Date
    Jan 2013
    Location
    Great yarmouth
    Posts
    15
    I'm abit confused,my mum was diagnosed with EAD at the age of 55.Is there a high chance myself of brother could inherit?

  9. #24
    Registered User
    Join Date
    Sep 2009
    Location
    Lowestoft, Suffolk
    Posts
    74
    Sorry guys, I haven't been on here for a while!

    Firstly Fozzy - don't panic. If you don't have a strong family history of Early Onset Alzheimer's I wouldn't worry too much. There are lots and lots of people here on Talking point with a loved on with Early Onset Alzheimer's and no further family histpry of the didease. The Familial form of it is very, very rare. In my family, I know that my mum and aunt had it and also their father and 2 of his three siblings also had it.

    twrist, if you send me your email address in a private message I can email you the FAD support group newsletter that has details of the meeting and who to contact to let them know that you are attending.

    XY123, I'm really sorry that you have found yourself here because of your family history - I really do understand, it has taken me years to get my head around it and I can't quite believe that I can actually say that I am okay about it all 95% of the time - I never dreamed that I would get through the panic and anxiety but I feel that being as informed as possible and also doing as much as I can to help the research has really helped me. If you would like details of the FAD meeting, just send me a private message with your email address and I'll forward the details to you

    Sophie xxx

  10. #25
    Registered User
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    Sep 2009
    Location
    Lowestoft, Suffolk
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    Fozzy - I've just realised that you're just down the road from me!

  11. #26
    New User
    Join Date
    Oct 2011
    Posts
    2
    Quote Originally Posted by supernurse View Post
    I am having a bad day today as my husband said his life was not going in the right dirrection and wanted a divorce, is it common for sufferers who have other health issues to say things that they regret later and how does their spouse or partner copes with that. Advice needed for a distressed carer of a FAD Sufferer

    supernurse
    Hi Supernurse,

    This is my first post. I am sole carer for my Early onset wife.

    For a long time before my wife was diagnosed (Oct 09) she routinely told her friends and family that she was being mentally abused by me. More recently she has told them that she wants to be away from me. She does not believe we are married, (our relationship go back about 15 years).

    What is painful for me, is not that my wife says these things, she has a serious disease which affects her mental state. What is really damaging to me and has made life unbearable at times is that some people believe her and have reacted negaitvely towards me.

    I am receiving professional help to deal with this and benefitting. I now accept that I should not take it personally. I also see the humourous side of the things she says and I have a wedding photo to produce when she denies the marriage. Of course only a short while after making her pronouncements she promptly forgets what hse has said and life moves on.

    Don't take it personal. Smile/laugh at lot and remember the good times

  12. #27
    New User
    Join Date
    Feb 2013
    Posts
    2

    were do u go for help & support?

    My stepdad has a bad background with his mum, cousins, uncles, grannys all being diagnosed with FAD. He is now showing signs & my mum is distraught & they don't know who to talk to. It's hard when she gets upset when talking to me. I don't know the words to say. It's all very raw & I feel that there is no hope.

  13. #28
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    Aug 2013
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    12
    Quote Originally Posted by josoap80 View Post
    Hi there,

    Problem is that afew weeks ago my sister turned the age at which Mum became ill.....and to be honest, I am struggling.
    Dear friend, the fact that your mother suffered dementia does not mean that your sister or you will suffer it. There is a dementia component which is genetic but it is not just that.
    Think about this: if all the people related to a person with dementia would develop the condition, a greater percentage of the population would develop it. Microgaming develops the games. For more info click here.
    I just suggest you to take it a little more easy. Just keep a eye on her but don´t panic.
    My grandmother´s sister died after living a long period with dementia but my grandmother herself is now 90 years old and walks two miles every morning.

  14. #29
    New User
    Join Date
    Oct 2013
    Posts
    1

    Worried about my husband

    My husband's mother, her sister and their mother were all diagnosed with dementia in their early sixties (his aunt just recently, which is what has suddenly worried me).

    I am worried that he will become a sufferer as well (he's 51) and I don't know what to watch out for, or what to do. His mother is very bad now, although when I first met her she was just a bit forgetful - repeating herself in conversation etc. She attends daycare five days a week now, and she has two carers who come to the house morning and evening to dress and undress her as she will not let her husband near her - swears at him and tells him he's a "bad man".

    I know it's very selfish of me, but we have only been married 11 years and I am worried that we may only have a decade left of being "normal". I know nobody knows what is around the corner, but I don't really know what to do (if anything!)

    I'm not really close enough to his father to ask him.

  15. #30
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    Oct 2013
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    4

    uncertainty

    Quote Originally Posted by Nuttyneddy View Post
    My husband's mother, her sister and their mother were all diagnosed with dementia in their early sixties (his aunt just recently, which is what has suddenly worried me).

    I am worried that he will become a sufferer as well (he's 51) and I don't know what to watch out for, or what to do. His mother is very bad now, although when I first met her she was just a bit forgetful - repeating herself in conversation etc. She attends daycare five days a week now, and she has two carers who come to the house morning and evening to dress and undress her as she will not let her husband near her - swears at him and tells him he's a "bad man".

    I know it's very selfish of me, but we have only been married 11 years and I am worried that we may only have a decade left of being "normal". I know nobody knows what is around the corner, but I don't really know what to do (if anything!)

    I'm not really close enough to his father to ask him.
    it seems you need to find a way of expressing your worries with your husband he maybe worried too!!

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