Almzheimer's disease early onset

[lumbagio42]

Hi everyone, I am 21 years old and my daddy is already having an early onset of Alzheimer’s disease. he has been diagnosed with this horrible disease approximately 4 years ago and he has almost got to that point when we should better not leave him alone so we are unable to let him stay by himself. I am now away at college and I do know very well that my mother is having a very hard time to take care of him only by herself for the most part of it all. of course, she needs to work that is why my father is at home by himself for nearly half a day or so in some days even though we avoid letting him alone. I do know pretty well that she is always worrying about him and I also do. I am thinking that now, there are holidays and I am going to be able to him my mother to take care of my father more. I would be happy to do so, I am happy that I am going to be there more for my father and I’m going to try my best regardless of how much this is going to hurt. But this is not enough. For the most part I could help my mother and be near my father is only the time there are holidays, like now and in the summer. But he needs care 24/7.

 

To be fully sincere with you, I don’t even know the exact reason why I am here. I do understand very well that nobody here can help, there’s nobody that can get rid of this horrible disease and of course, nobody would come to take care of my father. That is why, I guess, that the main reason why I am now here writing this post is thinking whether is here anybody who can relate on this? I do have a couple of friends, I am not so lonely, however, it is not the same. None of them has ever gone through anything like this before that is why it is pretty hard to relate or to talk with them about this. most of the time they are only telling me that they are sorry and they are saying nothing. I do understand them. they can’t really say anything.

 

Moreover, my aunt, who was only 44 years old also passed away a few years ago from this horrible disease. she have had 2 kids. At that time her daughter was only 9 at her son 14. That loss was very hard for all of us. I have said that my aunt “also” passed away due to the fact that my grandfather passed away again from this disease as well as my awesome uncle even before I have been born. I have searched a bit about this info so I know that early onset is purely hereditary, that is why there is about a 50 to 50 chance that my brother or I are going to get it. this is scaring me pretty much.

 

Once more, is there somebody  who can relate on this? it scares me.

 

[GreenUp]

Hello lumbagio42, I am very and very curious to find out more about your father’s condition as well as very intrigued to know more about your aunt and about all of your relatives suffering from this condition. I would want to know if any of them have undergone the genetic testing in order to determine if there is a mutation of the presinillin 1 gene? Besides, are you 100% sure that absolutely all of these relatives were formally diagnosed with this disease you have been talking about, I mean the early onset Alzheimer’s disease?

 

Also, if it’s not a problem for you then could you please describe your father’s symptoms. This might be helpful in understanding. I wish you all the best for you and your family.

 

[HelloKitty]

Hi lumbagio, I have just read your post and I got a feeling like somebody or something hit me with something pretty heavy in my head. I am 20 years old and my mother was also diagnosed with early onset alzheimers a couple of years ago, it seems that it was too late IMO as we all seemed to simply bypass the minor symptoms. Anyway, I am in the exact same situation as you as far as the college as well as the emotional strain I am having now of now knowing where it is my place now, where I should be now. I mean, I am talking about the fact whether I should be at home to see and to be there for the last years of my mother’s life (although it does seem that it is not really her anymore but somebody completely different) or I should be at school to build up my future, I am pretty often being told that I should be at school because that’s what she would want me to be, however, as you can understand, that’s a very hard decision. My father have had to retire so he could be able to take care for my mom but this is only bring up some other problems and pretty often, I am worrying for him too as he still has to live half of his life ahead (and I am pretty sure that you are also worrying for your mother, at least that’s what I’ve felt reading your post). Anyway, I see that you need somebody to whom to talk to so you should know that you can always feel free to reply to me and I would be glad to talk with you. I understand very well that the isolation as far as being able to talk with your friends who are having no idea at all on what this disease exactly is. I have noticed that there are a lot of people who don’t exactly understand what alzheimers disease means. Most of them think that this is just a simple disease who makes the person forget something at times. I have notice that they are clueless that this is far worse than what they think it actually is.

 

[alannasaj]

Oh yeah, I can surely relate to your problem and I hope that what I will share with you is gonna make you feel a bit better. in fact, there is no way that you would feel better, I think, but at least won’t make you feel so lonely. My mother also has been diagnosed with early onset alzheimer’s disease and she passed away a bit more than 3 years ago because of it at the age of only 57 years old. when she was alive she told me that her mother (my grandma) also passed away from the exact same disease. I am not exactly sure how far back in my family this disease is running but it seems that it has a strong gene.

 

Currently, every day I am living in fears that my life is also going to be taken by this awful untreatable disease. I have noticed that this is affecting me in some ways that I am not even aware of them consciously and I think this is the worst part sometimes. And I think so due to the fact that it is really slowly, already, killing me… I am not having plans for future, I don’t really care about future at all, I am not saving for retirement, I am not even planning to have a family at all because I think that if I am going to have this disease, I don’t want my future husband to suffer as much as I see that my father is suffering and I don’t want my future children to suffer as much as I am suffering. I don’t want to plan anything in future because I am not even sure that I am going to be there around to see it all. I don’t want to create something and then to leave it all.

 

It was very and very hard to see and daily watch my mother suffering. It is something that I wouldn’t wish even to my enemies (even though I don’t have any enemies). Rather than always being crippled by this fear and to live like I am a prisoner, I have been thinking about to get a test. I am already scared of the worse out there so I start thinking that it is only going to relieve me. in all this time I have been trying to do my best to get rid of my fear, I have been trying to search for some support groups, I have tried to meet other people that are having the same fears as I do and that are feeling the same way. I have been thinking that in this way we can understand each other better so we might get rid of our fears. However, all I could find is only people that are already suffering from this monstrous disease and caregivers… I am honestly very happy that I have found you lumargio but I would still appreciate very much any suggestions or resources that somebody could pass along.

 

I wish you all the best and I hope nobody else would ever suffer from early onset alzheimers disease.

 

[Bribeireeed50]

Hey everyone. I see all of you are asking for some support this is why I am now posting this. I do understand very well that this might be very scary to have your parents and relatives diagnosed with this disease.

 

I am now a 49 years old woman and literally a couple of days ago I have found out that I am having pretty big chances that I may have the early onset Alzheimer’s disease. I am married but I am having no kids but as I am now reading happening with a lot of people, I am now trying to think back and understand to how long this has been happening.

 

My husband is telling me that he thinks that these symptoms of mine could also be because of the fact that I am using pain killing pills. I do agree with him and I am going to see and try to taper down and to get off them at all and maybe then, these symptoms would go away and I won’t have alzheimers. I do know very well from my own experience that these pills I am using are having a direct negative effect on my memory, I have seen it in the past myself. I went off them once in the past and as soon as I have done it, it was awesome because my memory came back to me right away and the negative effects of memory and thinking noticeable subsided. That is why, we are gonna see what effects I am going to have this time around.

 

However, I do understand very well that this is going to be pretty hard this time due to the fact that my memory and thinking have become more problematic lately, much more problematic than the last time, however, even so, I am still at least 80-90% fine, I think… I can guess that your parents/aunts and any other relatives of yours suffering from this are very afraid. they, most likely, know that something pretty bad is happening with them, that is why they are either trying to figure it out or they are very upset (even though I think that upset is not the right word here) about it. sometimes people accept it and live with it like that.

 

Either way, for you, the children of parents with it or either niece, nephew etc. I am recommending that you could cope by:

 

You could learn more about this disease of Alzheimer’s. I know from experience that knowledge could be very powerful and you can also put you at ease. I know very well that it is helping me a lot to learn, that’s because lack of knowledge was (and it is still) making me very dreadful. Generally I think that we, people, are created this way: we are always afraid of what we don’t know.

 

Another thing that may help you out is prayer or/and talking about this with your relatives, with your friends and everybody who wants to listen to you, to tell them on how this is affecting you personally. It may help. it is like you are creating your own support group with everybody that you need, with your friends, relatives and so on and that’s very good when you need it.

 

Something that you can also do is to ask your other parent (I mean your mom if your father suffers from it, or your father if your mother suffers from it, or maybe your aunt’s husband if she suffers from it and so on) on how you can be helpful. I doubtlessly think that there are some ways that you could be helpful that you don’t even realize.

 

Or another thing could be that you might think and create yourself some ways that you could help, on your own. Only the act of thinking more on how you could help might already make you feel better. you don’t know, we never know until we try it out. that is why you need to do it first.

 

I wish you all good luck and god bless you all. hope that god is going to bless me to and will give me enough powers to get through this.