1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. weezy

    weezy Registered User

    May 12, 2008
    5
    South East England
    Hi, first time posting here so not sure the right place for this and its all a little bit nerve wracking! Not the actual forum, but being open and talking about the issues I have. It’s a long one too but I figured I’d get it all out in one go:D

    I am in my early 30’s, married with 2 children under 5. My dad died having suffered AD age 44, his mother died of early onset AD, age 46. My aunt (dad’s sister) is currently in her late 60’s and she has children all now in their 40’s none of ‘her line’ show signs of AD. I constantly think about getting it myself and don’t know what to do to sort myself out.

    I need to discuss the background with my mum and aunt, but really don’t know how to bring it up or really want to, to either bring up the upset of my dad or cause more heartache with them knowing how I feel about this. Having read a few threads (I only discovered this forum a week or so back) I can see there are other people similar to me in that they have this cloud having over them at the same age, or a little older or younger. Some were discussing genetic testing but as far as I can tell no-one has ever gone through with it, whether to settle down, have children etc. Sorry if thing re-surfaces clouds that others have managed to brush away but I do need to get this out of my system.

    I made my choice to have a family without really understanding the enormity of passing the gene on (if I have it) although I always wondered if it could be inherited because of dad and his mother dying so very young from it. I wouldn’t change the clock as that would mean I wouldn’t have my children but I now feel guilty that they might have to go through the suffering that I did if end my days having suffered with AD. And of course that they too might inherit. I used to think, I’ll be OK there’ll be a cure but I really can’t see that happening, I mean if I were to get EOAD the same age as my dad that would mean a cure being available in 8 years or less and clearly that’s not going to happen – I’d be lucky to get medication let alone anything else. OK there might be one for the next generation but not mine.

    I desperately want another child, but I have this voice telling me not too incase I do get AD as that child might only be 5 and never know ‘me’ and would leave my husband with 3 kids to care for as well as a wife and all the financial burdens of one income. I work full time and feel more and more guilty that I am not spending as much time with my kids as I should incase I can’t later on. I want them to know me and have memories incase one day I am not the same person. I need to work for financial reasons now and to help contribute to our home for future security, incidentally I do have critical illness plans which cover AD and I hope would pay out if needed?? But then I think why do I work this hard to have a nice home when I could end up in a NH with it all taken away from my family to pay for my care? I don’t know how the system works and I know I am probably really being overly pessimistic but it’s occupying my mind ALL the time.

    Of course I might be in a fatal car accident tomorrow, be diagnosed with cancer or another illness, but having been through AD and seen the person you love become a soul-less skeleton (sorry if that sounds harsh but to me it’s the reality of it as I remember) I just can’t seem to not think about it. Really, I think about it most days. Genetic testing has crossed my mind but there are of course pros and cons. One part of me would want to know so I can make changes now – like part time working or something so I spend more time with my babies and planning for the inevitable to make it easier for them. The other thinks I should just do that anyway and live to the full and put it to the back of my mind, but I just can’t seem to no matter how hard I try. My husband was away when I found this forum and I just cried one evening and couldn’t stop. I think it all came back to me reading everyone’s ‘story’, thinking of mine and the future.

    The first step writing this is a good one I suppose. Next is getting my husband to read it so he knows my feelings, but I don’t want him to worry (he’s a worrier!) and I know I have mentioned it before but kind of brushed it aside having set the seed. He (or anyone else) has no idea how I feel or even understands how life could be for him IF I were to be diagnosed. I want to talk to him, but also don’t want to worry him sick. Probably best not as he’ll soon realize should it happen.

    I am sure I mentioned testing years ago to my brother (I have one brother) and remember vividly him saying he was not worried about it and would cross the bridge if and when it came. He obviously has a better outlook than me and I should learn from that. I know my negativity has worsened with age and having had children; he is a little younger and has none (yet). My family mean the world to me and I get so sad at the thought of what it would do to them should I suffer the same fate.

    Not too sure what I am expecting to get from joining this forum or what value I might be able to add but for me but I do think I need to talk about it. The next I think might be a trip to the GP to discuss genetic counselling and see if it can clear the fog in my head, not necessarily to chat about testing, but just in general cause I can’t seem to move on.

    Thanks for listening (if you got this far!!).

    Weezy
     
  2. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Hi Wheezy,

    Welcome to the foruum. I hope that just writing all your worries down has helped you. I know it does when I do this. It would be a vey good idea to talk to your doctor about how you feel. You have real fears and real worries and need some help from the doctor.

    I can imagine the black cloud you feel you are living under but don't let this spoil everything you have now and from your post I think you have a very strong bond with your husband, children and wider family. This bond is so special and precious and sees many families through difficult times.

    I do hope that the doctor can help you with this terrible worry. Please let us know how you get on.

    xxTinaT
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Hello weezy

    Sometimes your worst fears are groundless, sometimes you have no fears and something dreadful happens.

    I am no medic but even if there is a genetic incidence of early onset AD it does not mean you are certain to develop it.

    If you are so worried it is spoiling your life please seek medical advice. I do hope you have a sympathetic doctor who can arrange for you to see the proper people.
     
  4. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    Hi Weezy

    So glad you've found TP. Imho I think a chat with a good sympathetic doctor would help enormously. Yes, dementia can be genetic but that is unusual. I'm not pooh poohing your fears, My Mum has Alzheimers, she had two aunts who both 'lost it' (one found wandering in Putney High St drinking ginger pop and eating cream cakes bless her)in their later years, (I'm going back to the sixties now)could'nt say that was dementia, it wasn't diagnosed back then. Her Mother (my Gran) died at 68yrs old in the sixties, and it was nothing for my Gran to leave her purse in the phone box, meat safe, cellar etc :D. She always said she'd put it away in a 'safe place'! I suppose what I'm trying to say is it could be genetic in my family, but I figure all I can do is keep my 'house in order' for the sake of my kids (grown-ups:rolleyes:)) and live for the day. Hope that you will get a good hearing from a professional that can allay your fears. Take care and do come back and post on TP it's a terrific place for support.
     
  5. weezy

    weezy Registered User

    May 12, 2008
    5
    South East England
    Thanks for your replies, I appreciate it takes time, especially to a newby! We have a familiy holiday coming up so I will speak to the other half about then if I can pluck up the courage and try to decide together. I think sharing my fears with him is a good idea even if if worries him as I can't keep bottling it up. I do think I need to speak to the professionals though as although the internet is a wonderful resource you feed yourself some scary information which should really be clarified by people in the know. In need to know more about the familial side etc. Granny G your quote "Sometimes your worst fears are groundless, sometimes you have no fears and something dreadful happens" is so very true and I shall try very hard to remember that.

    I wouldn't say this cloud is spoiling what I have now, but it is beginning affect the decisions I am trying to make for the future.

    Thanks again, wheezy
     
  6. elizabeth c

    elizabeth c Registered User

    Apr 16, 2008
    6
    Hi
    I do totally understand how you feel Weezy. My mum is 60 and has had Alzheimers for the last few years. Her mother also had it and there seems to be some doubt about whether her grandfather did or not. Doctors have not said it is genetic but of course with these facts it is very hard not to think it very well could be. I vary between being absolutely terrified and totally blocking it out. I also have 2 small children and am pregnant with a third. When other people talk about when their children are grown up , i feel sick and feel I can't even dare to think that far ahead in case what that means for them is to be going through what I am going through now. I wish I had had them when I was younger so they would be older when they had to witness all this - if that makes sense. I feel I need for my own sanity to do everything I can to prevent it from happening and want to research lifestyle factors etc but at the same time I don't want thinking about possibly getting Alzheimers to take over my life. Already I worry about forgetful things I do in case this is how it starts and gradually over the next 20 years I will do more and more things. I have thought maybe genetic testing would be easier as you would know one way or another and it could be good news which would get rid of all the worry but I feel it is not fair on my kids as when would I decide was the right age for them to learn they too could have this gene? I try to remember that in the past I have done a lot of things that are not good for my long term health - smoke, drink, sunbathe without sun cream and I don't spend every day worrying how this will impact me in the future. I would be grateful to hear anyone else's tips on how to live with this scary black cloud over your head??
     
  7. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    632
    coast of texas
    Live For Today

    I agree that what we see we as woman tend to make more of it is by nature that we are nurtures. So It is natural for us to worry. Mom has AD she is the first in her immediate family to have it although she may have had a great aunt have it several years ago.....75 or better. Moms mother died of cancer her mother died at an early age of a heart attack. We always talked of how her family generations skipped the next and went to that next person with the illnes (Moms grandmother died of a heart attack/stroke...mom has had strokes, my grandmother had cancer 5 times, I have fought cancer myself) I chose a long time ago to just live day by day. I have 3 wonderful kids who are almost grown (21, 19, 17). We have had our ups and downs, but if you choose to let this eat you up you will miss out on your child growing up.

    Talk to your dr. I think you will find that even tho your chances seem high he may be able to show you a difference in the way you would be treated if it were caught early.

    I also want to bring up that what may have been diagnosed as AD may have actually been something that is now curable. Some diseases mimic AD and can actually be treated with a shunt now.

    HUGS

    Nancy
     
  8. elizabeth c

    elizabeth c Registered User

    Apr 16, 2008
    6
    Thanks Nancy - that was such an uplifting message from you, someone who has suffered lots of difficult things. You are totally right and I do not want this to in any way affect the enjoyment I have from bringing up my children. Thanks for your support.

    xx
     
  9. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    Hello and welcome,

    I hope that writing all your fears helped in some way. I don;t have any answers and can really only agree with what has been said before that you have a chat with your doctor. Book a double appointment so that you have the time to talk through everything you are feeling.

    I have worries about the genetic side as my husband has early on set dementia he is 55 and we have to young children. But to the best of my knowledge there is no history on his side (but the his paternal side weren't long lived, so who knows) I just have to keep my fingers crossed.

    Take care of you.
    Jackie
    xx
     
  10. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    #10 jc141265, Jun 1, 2008
    Last edited: Jun 1, 2008
    Oops my message doubled up so I have deleted this one, see below for my final.
     
  11. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Dear Weezy,
    I really feel for you as I too have worried, and continue to worry on bad days about what will be my fate considering Dad has early onset dementia. The doctors said initially that it could be genetic but for my parents not to worry as there would likely be a cure by the time us kids could get it...like you say though that doesn't seem to be happening soon enough!
    I particularly worry as most people I know already consider me a tad eccentric, I am like the absent minded scientists (tho I'm not a scientist) that you read about in books, continually forgetting where I put things, forgetting people's names and then I also have mood swings...all the time when I do these things I worry, and I can't say it doesn't effect my life, because I do tend to live for the moment these days just in case I don't get to live as long as I expect. However, you must be far more worried than me, considering that your grandmother also had the disease.
    In your case, I think you have a fairly good argument to sit down with a doctor and ask for genetic testing - if you'd prefer to know. So I too recommend seeing a doctor.
    As for your concern about not spending enough time with your children, I have to say that my Dad was a workaholic and that was part of his character, I don't wish he had spent more time with me as a child, I just love who he was and I am thankful that he was a hard worker and provided so well for me as a result. So I think so long as you make sure your kids know that you love them, they won't resent the fact that you were always working. If work gives you happiness then this will make you a better mother anyway, if however you don't like to work the long hours full stop perhaps you simply need to point out to your bosses that you are happy to work hard, but require a work-life balance and point out that you are willing to sacrifice promotion to get it, so long as they can recognise that you are a valuable employee in the position you are currently in? In recent years I have been pretty much been doing that with my bosses...
    As for whether or not to have another child....I do believe that a cure is coming much closer. The progresses that have been made in the last 11yrs (since Dad was first diagnosed) are amazing. Also, perhaps if you have been out of touch with current progressions you may not be aware that there are now a lot more medicines out there that supposedly slow the disease down, so you should perhaps keep that in mind too....even if you do get the disease, you may have a lot more time than your father did.
    Giving a child a life is still giving a child a life, they may lose there mother, and it may be very hard on them, but all of us have our trials and tribulations. Your child might suffer the loss of their parent, but other children lose other family members, or are abused, or grow up in very harsh conditions, but generally they still get a chance to have a happy life despite these things, I do not think you should feel guilty about the possibilities, if you and your husband will love that child madly and look after as best you can. Yes, if you too get the disease your child will have to live with the same shadow, but it will be far more defined for them, with 3 generations of occurrences. This means that they can plan there life better than you can, there will be no question that they can get genetic testing, and I would think that by then, genetic testing will be far more specific, so that they can know for sure.
    So I guess I am suggesting that if you can, perhaps try to live with the fear but don't be ruled by the fear. I do this by kind of planning for both possibilities, I pay a minimum amount into my pension fund so I can enjoy more of my money now, but have so many job skills I am sure I'll be able to work until I am 100 if no dementia sets in!! I make sure I do the things I want to do now, just in case I don't get to do them later when I am old, if I do get to be old, then I guess I will just have to think of more things I want to do! :rolleyes:
    This fear when you let it eat at you can cause depression and a feeling of hopelessness...I've been there, believe me. But if you take another tac, you can use it to make sure you enjoy your life now, appreciate every moment, and I think that for me I'm beginning to see it as a blessing as at this rate, I don't think I will have any regrets about things not done, if it does happen to me. If having babies and loving children is what you love to do, then I'd say do it...and if the worst comes to visit, make sure your husband can pass on your apologies, your love, and that you thought long and hard about it, but thought that despite the terrible experience of having dementia in their life, you thought a wonderful life with your family would be worth it for them. Also would having another child mean that you get to spend more time with your other kids at home for a while, and would it also let you back away from work commitments for a while?
    Well thats my thoughts anyways....:D
    Others may feel completely differently, and they may be right...but thats why forums like this are good, because it helps us all see things from different perspectives.
    My thoughts are with you.
     
  12. weezy

    weezy Registered User

    May 12, 2008
    5
    South East England
    Wow, thanks so much for those replies and although I wouldn't wish these feelings on anyone it is comforting to know they are in a sense 'normal'. Not everyone feels the way I do and can put it to the back of their mind, or used to but have taken a much more positive outlook. I toohope I can take that path.

    Nancy I think you are right that talking to the doctor might at least reduce my fears if he can give me some info about treatment if caught early and such like. If that looks promising and there is a real possibility of reducing the speed of each stage then it will be a comfort should the worst happen.

    Jackie sorry about your husband, he is also young for you to all be suffering this. I think I'll need to book a slot with the doc that lasts the whole afternoon :D

    Elizabeth like you I have done things in the past that aren't good for your health (though not a smoker), sunbathing that sort of thing but do not worry unnecessarily about that. I think as a lot is curable is less of a worry. I just take better care now, like always using spf 15 etc when I am out in the sun even in the garden pottering. So on that side of things I am going to try and make lifestyle changes now to try and reduce the risk, though if I am honest I can't see it making much difference if the gene is there, but if it means being the healtiest I can be then its a huge feeling of well being anyway regardless of the AD outcome. Not that I am unhealthy but I could go a step further thats for sure. For the same reason I want to continue efforts with the kids on board for a healthy lifestyle.

    Nat I think I am a mad scientist too:D but tbh but it down purely to lack of sleep as I don't get enough (6 hrs if I'm lucky, never uninterrupted) and it totally wrecks havoc with my ability to do anything. Somedays I can't even speak properly:eek: I admire you actually, for the way you cope with the fears you have and you have given some very valuable thoughts and advice for which I am grateful. I am lucky workwise that although I do 5 days, 2 are from home with other flexibilites. I'm in a small team of a large company which is very flexible so long as the work gets done I can kind of work things how I like. My son starts school soon which will see me collect him earlier than now (full time nursery) so hopefully it will strengthen our relationship further with him knowing I am there at least 2 days to drop and collect from school, do homework, have friends home and all that. Although I complain, the balance is OK, it just means more stress for me getting everything done when they sleep (hence my lack of sleep)!!! I am the Queen of multi-tasking and joke the only time I sit down outside the office or commuting is to go to the loo:)

    I don't think this cloud affects the way I bring up my children but I think if I knew I was going to get it I would certainly reduce my working week to spend more time with them and reduce the stress levels so I get more quality time. Not sure I would really want to give up work as I am a better mother as a working one I think. Also it does keep my mind active and challenges it which has to be good? I might look into the finacial side of things more to ensure everything was mapped out as best possible. BUT I don't thikn I am ready for genetic testing as I am not sure how I would handle a more risky result, hence the need to speak to someone who is sufficiently trained.

    My action plan is to talk to my hubby first on holiday, he won't like it I know but he has to know my worries. I will then be able to speak to the doctor openly without feeling like I am keeping secrets (from hubby). Following this I am hoping to be in a better position to make a choice about that 3rd child - have one making the most of maternity leave and beyond with all of them and know I made the choice with me and hubby better informed, or stay as we are making the most of the unit we have and taking from life the best it has to offer without regretting choices. Whether we stick with what we have of have a football team I need to do that regardless.

    I have also decided to write letters to select people. It might sound a bit OTT now, but I want to say things now whilst I can. Not just for the risk of AD but for anyother nastys lurking out there, but AD most so I get it all out whilst able. Maybe I will start them and add over the years, but I want them to be there. More for my children so they get a feel for 'me' if the worst happens and to know the people who I want to be a big influence in their life have my thoughts to hand, particularly my kids godmothers/fathers who I choice knowing the positive influence they could have on my kids lives should I leave them behind. I will feel more content having done this and hope it will help me move on. No idea where to keep them though!

    Although I am a weee bit sad and still have the cloud, I do feel slightly more positive having found tp and certainly given myself so set steps to follow afterwhich I hope to build my choices from. Here's hoping a lovely relaxing family holiday next week in the sunshine will do wonders:)

    Thanks again, weezy
     

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