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
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
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