New Member-Venting

[LoveMyMom]

My mom was diagnosed about a year ago. She can still walk but it is very difficult...she moved to a cane and is thinking about a wheelchair. She doesn't have strength in her hands and has a noticable strain in her voice.

I am writing b/c i have been so angry lately. I pray for her everyday and have faith in her but i am scared. She can live 2 years, 5 years, 10 years, nobody knows. I am so close with my mother. I just got married and want to have kids in a few years. I am scared that she wont be there for that. I want her to be a grandmother, i want to be able to go to her. This is a new stage for me and i need my mom. I see older women who are close with their moms and i get so bitter. I am only 23 if she was one of the ones to live for 10 years with the disease i would only be 33. I am so scared of not having her. I don't want to sound selfish. I know what she is going through is a million times worse with me.....but it is hard being on this side to. The more time goes on the more upset i get. I feel bad for my dad...he loves her so much. Sorry i just needed to get that out.

Are there any other females out there who have advice? what are you going through. i am tired of everyone sugar coating everything....i want to know the truth. Whenever i talk to someone they always say: i knew someone with als and they lived for a long time....funny nobody will say anything about those who did not.

 

[marlo]

Hello

My mom was diagnosed about a year ago. She can still walk but it is very difficult...she moved to a cane and is thinking about a wheelchair. She doesn't have strength in her hands and has a noticable strain in her voice.

I am writing b/c i have been so angry lately. I pray for her everyday and have faith in her but i am scared. She can live 2 years, 5 years, 10 years, nobody knows. I am so close with my mother. I just got married and want to have kids in a few years. I am scared that she wont be there for that. I want her to be a grandmother, i want to be able to go to her. This is a new stage for me and i need my mom. I see older women who are close with their moms and i get so bitter. I am only 23 if she was one of the ones to live for 10 years with the disease i would only be 33. I am so scared of not having her. I don't want to sound selfish. I know what she is going through is a million times worse with me.....but it is hard being on this side to. The more time goes on the more upset i get. I feel bad for my dad...he loves her so much. Sorry i just needed to get that out.

Are there any other females out there who have advice? what are you going through. i am tired of everyone sugar coating everything....i want to know the truth. Whenever i talk to someone they always say: i knew someone with als and they lived for a long time....funny nobody will say anything about those who did not.

Hello,

I'm very sorry that you are having to deal with ALS,, when you just got married and have the rest of your life ahead of you and want so much to share it with your mother. But the truth is,, no one really knows how long anyone has that gets this disease. My neurologist told me i probably had about 2 years. That leaves me about 13 months. But it's not up to him,, it's up to God who gave me life,, to take it back when the time is right. I have a 23 year old son,, who has a new wife, also a 25 year old with a new baby ( my first grandchild) and a 33 year old daughter that is suppose to take care of me,, when i can no longer stay alone. So i too have reasons to want to live just as your mother does. But keeping a positive attitude is one of the best things you can do for both of you. You may not beable to do some of the things you use to do,, but make the most of what you can do together. Those will be the memories you will be left with later,, and you DON'T want,, only bad ,, doom and gloom memories. My family has decided to laugh together as much as possible,, and let the rest take care of itself. I'm sorry i dont' have better info for you. You take care and feel free to vent anytime.

Love and Prayers
Marlo

 

[dana]

My dad has ALS and is currently on a ventilator. It has been a very tough road with many bumps, but there have also been happy times where we laugh together. I have a son and would like to have more children, and my biggest fear is that my dad will never get to see or know my future kids. I feel very blessed that my son knows who his Papa is right now, but he is only 2 and I worry that when my dad leaves us one day, my son will not remember who his Papa was. So, I have taken many pictures because I want my son to remember my dad and I want to be able to share those photos with whatever future children I have. I find myself thinking about what life could have been like if this wrotten disease had never come into the picture, but since it has, I try to focus on the present and not the past or future. I try to take in each moment that I have and cherish it. I have kept a journal over the past year, and I noticed that most of my entries were negative about how I was feeling with what dad was going through. Over the past month, I have tried to change that and only write down the positive things that have been happening with dad. I want to remember the good and not the bad. I guess what I am trying to say is that you are going to go through so many emotions and not all of them will be pretty, but at the end of the day just try to enjoy the time that you do have and make the best of it. Like Marlo said, you don't want the final memories of your mom to be only doom and gloom. Sometimes it is hard to think happy thoughts when everything around you seems to be crumbling, but there is always something to be thankful for.
Dana

 

[LoveMyMom]

thank you

Thank you for your replies. I understand what you are saying about the good memories. One thing my mom said from the beginning was that she didn't want to deal with the gloom and doom...she wanted to make the most of it. When i am with my family i am happy and it is all positive...it's when i'm alone that i've been having the problems. But i do want to make the best of it. There's nothing i personally can do to change what is happening to her...i have to accept it and just be happy with her now. Good luck to all of you. Thanks again

 

[dana]

I know what you mean about putting on the happy face when you are with your family, and then when you are at home it is a different story. I still go through that from time to time, which I think is totally normal. Some days I leave my mom and dad's house and feel great and think how lucky we are to have the memories we do and that we are able to still make more memories. Then other times I leave their house crying and thinking how unfair and difficult this all is. It is hard to make sense of it all sometimes. I don't know if you have anyone you can vent to. When I am having a hard time, I cry and vent to my husband, and it helps so much. After venting and crying I am usually to pick myself back up and feel better and put that happy face back on.
Dana