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I can't stop thinking about it being hereditary

Discussion in 'Younger people with dementia and their carers' started by DianeG, Nov 8, 2007.

  1. DianeG

    DianeG Registered User

    Oct 12, 2007
    50
    Glasgow
    Hi,

    You are going to think I am barking mad, BUT, since watching GMTV this morning and Fiona Phillips going on about her mum dying being a younger person with Alzheimers and dying at a young age and then going for tests to show what she is at risk of....I can't stop thinking about it.

    My husband noticed i went quiet after watching the programme but I said nothing. Inside I was crying my eyes out in the fear of me getting it too. This sounds very selfish I know but I am terrified my life is going to be shortened due to this damn illness too.

    All this crazy worry when I know I should be worrying for and trying to help my mum through it at the moment.

    I though I'd managed to park those kind of thoughts but they just keep coming back. Anyone else feeling anything like this?:confused:
     
  2. SHANDY

    SHANDY Registered User

    Jan 24, 2007
    26
    heriditary

    yes, i think about all the time, but i tend to put it to the back of my mind and get on with looking after mum, who's in a nursing home.

    after all, our relatives never for a moment thought they would get this horrible illness, if they did they would have done something to stop it. sometimes i am trying to think of something and my mind doesn't allow me to do it , and i always think ' oh no , will i get this' but then the thought passes. i sometimes think this happens because we have so much on our minds.

    i think it's a natural reaction, but i do agree with you , the thought scares me to death as a well.


    regards


    shandy
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    Dear Diane,

    No one thinks you`re `barking mad`. It`s really scary thinking you are more likely to develop AD if you have a close relative with it.

    When my mother had it her GP frightened me to death by saying he would keep a close watch on me in the future.
    Well we`ve moved away from that GP, and so far I`m OK. It`s my husband who has it, obviously no blood relationship with my mother.

    I have slowly forgotten that scare and I hope you do too. To my knowledge there is no way of testing whether or not one is genetically more inclined to develop the condition. I believe, although I have no proof, you are less likely to inherit the AD gene, if there is one, than the breast cancer gene, or heart defect gene.

    I know it`s easier said than done, but try not to ruin the rest of your life thinking about what might happen. There are ?number of people killed on the roads every day. Will it stop you crossing a road.

    My husband was a planner. He was always thinking in the future and wasting the present. Now he has AD, he has no future. Please don`t be like that.

    Love xx
     
  4. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    Hello DianeG

    You are not barking mad and it is natural to think that we inherit all sorts of things from our parents and that includes, health problems.

    It is heartbreaking to watch your own Mum going through this TERRIBLE ILLNESS and knowing there is nothing you can do.

    None of us know what to expect, but our minds tend to work overtime and our imagination runs away with us.

    If your Mum had known what was going to happen to her, would she have done things differently?

    My Mum lives with us and her AZ rules our lives, it is such a complex condition and so unpredictable.

    I just hope that if I develope AZ that there is either a cure or Euthenasia is an option.

    I hope you have someone you can talk to.
    Take Care
    Best Wishes
    Janetruth x
     
  5. DianeG

    DianeG Registered User

    Oct 12, 2007
    50
    Glasgow
    Thanks

    Thank you all for coming back with your thoughts so quickly. I know I can't let it ruin my life and I guess there are just some times when it pops in to my head and stays at the front for a while niggling me.

    I'm so glad I found this forum. I think my head would have been in knots all day if it hadn't been for you all being so good as to reply when you did.

    I appreciate it.

    Diane x
     
  6. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    It is perfectly natural to be worried. I fear for our 2 children and the only way I block this out is to tell myself that they take after me rather than their dad.

    I did ask about a genetic link at our last consultants appointment and was "assured" that a link is very unlikely and in any event the boys would not be tested until they are over 18 and with their full consent. And to be honest until there is a cure I don't think I would ever consider going down that route. They need to live their lives to the full and not worry about "what ifs"
    Jackie
     
  7. tmitch

    tmitch Registered User

    Oct 29, 2007
    8
    Cornwall
    Also feel the same way!

    Hi DianeG

    I have also been having these thoughts over the past few weeks, as I am the only child and have no brothers or sisters to share these thoughts with I find myself thinking of it a lot, what If I get it?.
    I have even asked my mums sister about their gran and nan etc, my mums mum died of a brain tumour when she was 37, so she was very young, my mum was only 17 at the time, but both her parents lived for a very long time and had no signs of this, my mums dad died of heart disease when he was 67, and his parents also lived a long life and also had no signs of the disease.
    People tell you to not think of those things and just let life go on, like people say its a good job we dont know what tomorrow brings sometimes.
    You can let these thoughts eat away at you or you can just make the most of what you have here and now and try not to think about the future, I feel that is the best way of dealing with the thoughts and try to take each day at a time, its hard but I have to do it, if I want to make the most of my life with my family, I have a fantastic husband and a fabulous daughter and they are what keep me thinking positive

    take care

    Natasha

    :eek: :eek:
     
  8. zed

    zed Registered User

    Jul 25, 2005
    76
    London
    oh yes I worry too!

    Yes this is something that has worried me since my mum was diagnosed aged 57, when I was 26.

    I believe there is a test you can get to see if you have the gene, but I don't know whether the results are clear cut or not. You could ask your GP to refer you for genetic counselling.

    What I do know is that when someone has inherited Alzheimer's, there are often other close people in the family such as brothers and sisters who have it. Are your mum's brothers and sisters all over the age of 65 now? And if they do they develop dementia at a later age, as I understand it this woud not be genetically linked to your mother's young onset Alzheimer's.

    I get worried when I think about as my mum's father died in his early 50s, so maybe he had the gene and would have developed it if he'd lived longer. But my mum has 3 sisters who are all older and none of them have the disease. My mum's mother also had dementia, but she was in her 70s when she developed it, and lived to 85. However my aunt likes to say things like "it could be you next" which doesn't help!

    My sister reminds me that anyone could be run over by a bus tomorrow! So there is no point in worrying about something you can do nothing about. What you can do is live a healthy lifestyle and keep your brain active which reduces everyone's chances of dementia, and think about writing a Living Will so that your wishes are adhered to if the worst does happen.
     
  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Dear Diane, I don't know if you actually watched 'The Killer in Me' shown last night? What I found fascinating was that those who expected to have a genetic predisposition to certain diseases because of their family medical histories in fact did not. (Admittedly a sample of four is hardly scientific evidence!) As an adoptee who has spent many years trying to ferret out my birth family's medical history, I realise now it has all been a rather futile exercise :rolleyes: ........ I don't know which 'good genes' may have stamped out any 'bad genes' ...... quite a comforting thought that whatever our backgrounds we are all absolutely unique!:)

    I find myself often thinking of Taffy's signature here on TP (many thanks again Taffy!!!):

    Worry is like a rocking chair
    it gives you something to do,
    but it doesn't get you anywhere.


    Love Karen, x
     
  10. bleep

    bleep Registered User

    Jun 20, 2007
    9
    England
    Choice

    Personally I have decided to make a Living Will because at least that is something I can do and have control over. I cannot control whether I inherit FTD and/or Motor Neurones Disease from my father so it is pointless to dwell on it (I will keep telling myself that). What I can do is make my treatment choices (good or bad) if the worst does happen and that has given me some comfort. I often wonder whether my Dad would choose to fight to the bitter end, or not, if he was still capable of telling us what he wanted? I guess I will never know. At least the family will know my wishes if the time comes and this may make it easier for them when it comes to the tough decisions? Well you can only hope.

    Cath
     
  11. DianeG

    DianeG Registered User

    Oct 12, 2007
    50
    Glasgow
    Cath,
    That is a good idea. Probably the only sensible action that can be taken. Did you use a solicitor to draw it up or can you point me in the right direction to get me started.

    Thanks
    Diane
     
  12. bleep

    bleep Registered User

    Jun 20, 2007
    9
    England
    living wills

    Hello,
    I got the information from www.ves.org.uk which is now changing to www.dignityindying.org.uk. and then sent off for a living will form (£25) from them. No doubt a solicitor could do the same kind of thing (at a price) but I prefer to read through all the information in my own time as it is not the easiest stuff in the world to think about. Feel better for having done it though and I guess that's all that matters.

    Cath
     
  13. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Take each day as it comes and savour every minute

    Dear Diane G,
    I can understand your feelings. My husband's family have not visited nor phoned in the last 4 years and they seem to be ignorant on the subject. That is there choice. On my side of the family it is heart and cancer and I have had one heart warning and several cancer scares. I have put it to the back of my mind. I know it is not easy but I do try to think on a positive level and I have been disabled for 21 years. I live for my children and grandchildren. My 7 year old grandson asked if I would ever get better and I replied no. Will you die? I answered not yet, I have too much to do with you grandchildren. Only a suggestion but have you read a book called Positive Thinking ? Wishing you all the best. Christine
     
  14. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    I found this thread very interesting as it links closely to my sister and I. Our mum has FTD - she started at 56 as far as we can see but obviously could be earlier. We've seen some stats that tell us 50% of FTD cases could be genetically linked - I stress the word could!. I agree with what others have said that for a genetic link you would expect to see a lot of it in one family strain as it were.

    Unfortunately, we have no knowledge of my grandmother's family as we do not know who her father was so we both have to expect that this could happen to us - again I stress the word could!!

    However, I have taken this as a challenge. If this should happen to me at the same age as mum I've got 27 years to go of good living. Frankly, it's enough to scare me into making the most of the time I can forseeably see I've got!

    I don't know about anyone else but I spend a lot of time saying "when my kids are older..., when I've got more time...,when I've got more money..." - well by the time these things happen my time might be up so I'm going for it all now!!!

    This is easier said than done when you have real life to contend with but I sure intend to have a go.

    I agree with the living will - I think it's a great idea because sometimes by the time these things hit you're not completely sure what your loved one would want. I've made it clear to my husband that he's to find me a nice care home and then to find himself a bosomy wife who will bake him cakes and love my children.
     
  15. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    Oh Kate, you've made me cry. What a wonderful thing to say to your husband. Fantastic attitude.
    Love
    Jackie
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    She wouldn`t be able to replace you. :)

    Love xx
     
  17. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Aw, how kind.

    You never know she could be better - she'd sure bake better than I can...!
     
  18. sooty

    sooty Registered User

    Feb 17, 2007
    50
    Nova Scotia Canada
    not a good day

    I haven't been on talking point for a little while as Mom is now settled in the nursing home. But today I was holding my year old grandson and just lost it and started to cry and can't seem to get going for Xmas and keep crying about Mom and there she is in this home the first Xmas ever. She will be there all day and I may not be able to get through from Canada on the phone as its so busy. What happens in homes on Xmas day when there are no friends or relatives going? She has had visitors regularly but I know they will not go Xmas day. Last year my friend had her for the day, but she has been today to see her in the home. Do they just have a few stay and a skeleton staff on? Sooty
     
  19. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Sooty, I don't think you should worry. All the homes i've known have always made a big thing of Christmas. There will be a party, and a visit from Santa.

    There will be many people staying in, quite a lot never have any visitors, never mind at Christmas. And there will be a full complement of staff, maybe more than usual. They really do make an effort.

    It won't stop you feeling sad that you can't be with your mum, but please don't worry about her. She'll have a lovely time.

    I hope you have a lovely Christmas yourself.

    Love,
     
  20. sooty

    sooty Registered User

    Feb 17, 2007
    50
    Nova Scotia Canada
    Thanks Skye for the reassurance about Xmas day at the homes.
    I meant to post that somewhere else as I was also worrying over the heritary issue. Mom has vascular dementia(small vessel) . My Dad had vascular too starting before 60 (Binswangers dementia) and both sides of my past family have had/ or died of strokes with heart disease before dementia really set in. I guess the meds today keep you going. I asked a doctor if it was heritary as I also have medicated high blood pressure for 10 years and a small valve problem with my heart. He said I have a 1 in 4 chance of getting it ,but I am careful with diet and meds etc I do have living will and POA set up-but it is on my mind now I see how Mom is going the same as Dad.
     

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