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breebylou

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My mother, who is forty-three years young, told me a while back about some of the symptoms she'd been having (slurred speech, a foot that would drag,) and I thought, "Well, whatever, it'll end up just being nothing and we'll go back to our normal life." Wrong. What I didn't know is that through a process of elimination, we would find ourselves looking at the thought of ALS.
So she's all I'm-tough-and-not-scared and she kind of laughs at me when I'm bawling my eyes out, but what I'm thinking is, "Woman, you've got me (age fifteen), and two other kids: nine and six years young, how are you not upset thinking you won't get to see your kids get marriend and you grandchildren and everything else you are going to miss out on?!?"

I really don't see how she can be so optimistic, usually she is the sadistic one and I'm telling her it'll all be okay.

My question is : how do you get used to the fact that the person you love more than anyone else in this world is going to die, and what can you do to help them as their main caretaker?
 

Al

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Hi there. While a diagnosis of ALS is in effect a death sentence, believee me it is not all bad. Not everyone dies in the 2-5 years. Some live 10-15 years. Steven Hawking is still living after many many years. The thing is do not give up hope. More research has been done in the last 5 years than the previous 50. There are reasons for hope. Don't lose it.
AL.
 

CindyM

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do you get used to the fact that the person you love more than anyone else in this world is going to die

This is something that people who have been there can help you with. There are a lot of folks around here who are grieving loved ones, but most us us have the benefit of having a few years of life experience to help us learn how to cope. I think you should talk to your guidence counselor at school. We will help you as much as we can, and also somebody who works with younger people should help. Please tell the counselor you like best and then let us know how it went! Cordially, Cindy
 

crystalkk

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Is there any other family members besides youself that are going to be able to help. You have not mentioned your dad is he still in the picture, you said there is a 6 an 9 year old siblings. Does anyone else in the family or any of her freinds know what is going on, you are very young to be taking this on yourself.
Your mom's positive mind set is a good thing, As a Mother what is most important to you is your children,
so she has no choice but to be strong for you guys. trust me I am a mom of two small children and they are my life.
Does she have a definite diagnosed yet, It might turn out to be something else.
I will be praying for you...
 

kmgy

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Crystalkk - I believe breebylou is shatzie's daughter. She said in a previous post that her mother told her to come to this site for info and support, and I remember reading that shatzie was a young divorced mother of 3 (same location, same ages). Therefore, Breebylous parents are divorced.

breebylou - crystalkk is absolutely correct in that your mother is going to be strong for you and your siblings no matter what. There is always hope, so optimism is a wonderful thing. Without hope and optimism, there is nothing to hold onto. My father had als, and I attended all appointments with him, talked the individuals at the als clinic, and gathered as much information as i possibly could so that I could understand as much about the disease as possible. I wish this site was available when he was sick, because the information here is very accurate. Maybe your mother will let you go with her to her appointments. The als clinic may also have support groups for children of pals and you can speak with others in your age group/situation.

hang in there, and try to think positive.

kmgy
 

pmbenb83

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Hi Breebylou,
My kids are just a little bit older than you... 19, 22, and 23, and they are also trying to come to terms that their dad may not be around to watch them go through their important moments in life. If you want to exchange emails with our daughters, I can give you their email, Facebook, and MySpace info. I know our girls will need to talk with someone who is feeling this from a different perspective than I am. Our son probably won't interact too much, but will listen in on what his sisters have found out. :) You know guys. lol Sometimes talking with other people who are going through this gives you strength; I'm not sure how, but it has for me.

There are so many things in the beginning that makes this seem so overwhelming, but if you try to take in a little info at a time, it seems to lessen the anxiety/stress a little. Kind of like studying in school.... you knock out one subject's homework and move on to the next subject or else each subject's material will get jumbled in your head and freak you out before an exam.... at least this has been our experience with our kids. LOL

You hang in there sweetie. We are all here for you and your mom.

Lots of hugs,
Pam B in Va
 

crystalkk

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kmgy.....I think you are right, thanks for the info.
 

breebylou

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Yes, I am shatzie's daughter .. these are our nicknames for each other :D

My daddy is still in the picture, yet they are divorced and I don't get along with him and the boys are way too young to really deal with it and know.

CindyM - I have talked to people, mostly adults, but it is still hard to really grasp the idea, though I'm trying.

Al - I know that some people do live a long time, and I am hoping she'll be one of them, yet I do not want to get my hopes up.

pmbenb83 - That would be nice, dealing with kids who are somewhat my age who has a parent with it. :D

kmgy - Like I said, I am an optimistic person, but like I told Al, I don't want to get my hopes up.

Thanks everybody.
:D
 

kmgy

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breebylou
I am glad to hear that you are an optimistic type gal:mrgreen: I know that you are worried, i have been there myself. If I had one good recommendation for you it would be to take one day at a time. Try not to get too caught up in the what will i do in the future. I know that it is easier said than done, but if you deal with things one minute, one hour, and one day at a time, you will not feel so overwhelmed. Enjoy what you have at the moment. Try not to look too far ahead.
 

pmbenb83

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Hi Breebylou,
I will see if Al or Cindy can pass along my girls info to you, since you don't have access to private messaging yet. I'm sure they will appreciate talking with you too.... someone in their age group who can understand what they are feeling.

Take care. ;)
Pam B in Va
 

dadsgrl4life

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Hey Breebylou! I have the same anger with whats going on with my dad. I was told the other night by my mom (pmbenb83) that she talked to you and suggested that we talked! And I'm all for it. I have been doing research on ALS for a college assingment and its tough to sit there and read the reffrence book and start thinking that "omg my dad has all of these symptoms." It was hard to fight back the tears. :-? Everyone tells me that "your dads going to be fine, he is a rock!" Yes that great to hear and all but deep down I really know whats going on. My dad and I have this humor about us that we just joke it off. Its our way of coping. And it works, granted at night before bed I still end up crying. But thats another way to cope.

Just like you my dad is 45 years young and its a scary feeling.But the books that Ive been reading have been saying that the age bracket is 40-70. My dad doesnt have the slured speach yet but he is loosing some of his movement in his arms. We use to play softball together every summer, but now I cant seem him pitching the ball with his right arm anymore bc he cant lift it straight up like you and I can.

The way that Im dealing with the fact that my dad might be dying soon, is just living day by day. Im trying to do things more as a family and staying closer to home. I was away at school for a semester and that just hurt. I wasnt here to help my mom with things not to mention I was almost 7 hours away. But for me being back home and being able to hang out with him makes my days easier to get through. But when I saw 27 Dresses with my mom and sister, when I got home it upset me and made me cry. Bc I do have that fear that he wont be able to walk me down the aisle or see and get to know is grandchildren when I have one. So it does take its toll on me too! Just live one day at a time with her and love every minute, like I do!

Hope to hear from you soon!

Dadsgrl4life!
 

dadsgrl4life

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Hey Breebylou, I am one of Pmbenb83's daughters. I was just stopping by to see how you were dealing with your moms health issues. As soon as we have enough post my mom said we can Pm with each other. Untill then we can chat here!
 

CindyM

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Once again, a solution arises from our members! It is nice to see you guys hook up with one another!
 
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