My mom has ALS - Amyotrophic Lateral Sclerosis (ALS) Message Board

Nirvana_fan · 06-07-2003, 08:21 PM

My mother has had this horrible disease for quite sometime now and i'm scared to death. Its changed me a whole lot as a person and I've learned to appreciate good health. My mom can't walk anymore and has a lot of speech problems. I'm "guilty beyond words"(as kurt cobian once said) because i'm not doing enough as the son and sometimes i don't feel as if i care enough. I'm 18 years old and its more then i can handle with everything else goin on. I get drained phyically and most certainly emotionally. My step dad does the most for my mom and he has been so dedicated towards my mother and i'm forever in his debt. I don't know what to do sometimes and i feel as one day i will regret alot of things. My mother has been through alot in her life before she got this disease and she certainly didn't deserve it one bit

-Richard

[This message has been edited by Nirvana_fan (edited 06-07-2003).]

whippo · 06-11-2003, 03:09 PM

Hi,

My Mom had ALS, and when she was diagnosed I was 18. I can imagine your feelings. I often felt guilty for doing something else while I could have spent time with my Mom. However, someone special made me to see the other side of the story, so to speak. Your Mom wants you to live and do "normal" things. Seeing you going on in your life will give her strength and trust that you can cope on your own. I always thought that I would feel really guilty when Mom passes on, but now that she's passed on (at the end of January) I don't really feel that guilty because I know she knew I loved her, and she also understood that I have to live my own life. I do get my weak moments when I think that if this and that could have made things better.

I wish you strength and everything good in life.

whippo

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- Life is short, goes by too fast. So while you can, make it a blast. Make memories that will last. Don't live your life with regret. There will be mistakes you wish you could forget. But remember all the times, the good and the bad. The ones that made you happy, the ones that made you sad. Love life and appreciate what you've done. And you'll find that true living has just begun. -

slaughter17 · 06-12-2003, 09:48 PM

Hi there Nirvana_fan,

You replied to me about my father. I know how you feel. Maybe not 100% but I have a good idea. My father has ALS and was diagnosed Aug. of 2001. I was just married and gave birth to my daughter. My husband and I were looking to buy our first home. And then this happened. So instead of moving out, and starting my new life, with my new husband and new baby; I decided to stay at home and live with my parents and take up the full time job of taking care of my dad. My mother was so devestated that I ended up taking care of her too. Just recently we bought our house and moved out. I now work part time with Hopice (a company that takes care of people who are dying) I figured that I have all the experience. I have been taking care of my dying dad. I am hoping to continue with my school education as a Nurse. Anyway... what I am trying to say is that I put my entire life on hold for almost 2 years. I dedicated everything I had in my soul for my father. I still do, but I now have learned to balance myself. And I don't regret one thing. Let's face it, my dad is dying! Any day he could be gone. I want to make sure that I won't look back and say, "you know I wish I would have asked him how to fix my car," or "why didn't I tell him how great of a father he was?" I have the rest of my life ahead of me to persue my goals. I am only 22 yrs. old. My father only has a very limited time to spend on this earth. And I will be damned if he doesn't enjoy his last days.
Be yourself. Don't "force" your self to help out with your mom. "Let" your self do it. Life sucks, but at times can be great. Your 18. You have time. Your mother does not, and she needs the people she loves in her life now. Not tomorrow. NOW.

I think you need to read this one again.....thanks whippo!

"Life is short, goes by too fast. So while you can, make it a blast. Make memories that will last. Don't live your life with regret. There will be mistakes you wish you could forget. But remember all the times, the good and the bad. The ones that made you happy, the ones that made you sad. Love life and appreciate what you've done. And you'll find that true living has just begun." -

[This message has been edited by slaughter17 (edited 06-12-2003).]

Shane K · 07-21-2003, 09:32 AM

My mother had ALS. I can understand your feelings of guilt. It looks like we, and our mother's have somthings in common. She too had a difficult life, although she never would have admitted it. It was so hard to the the oldest son and not be able to really help her when she needed it the most. She would allow visits, but she would rarely let us help her with anything. She wanted us to continue our lives and be happy. Impossible for us of course. She was the most important thing to us. The trouble is we needed to help her, and for two years after her death I continue to feel I should have done more. Ask your mother if there is something special she would like you to do every day or week. Maybe a little flower, a movie rental for her, a ride in the car, anything that would help her. Explain that you want to do something, you need to do something. It will really help. Make sure that you step-father takes a regular break, he sounds like a good man, like my father, but they need breaks.

Talk to anyone that will listen. You need care now too, Richard. I'll be thinking of you.

Shane K

Quote:

Originally posted by Nirvana_fan:
My mother has had this horrible disease for quite sometime now and i'm scared to death. Its changed me a whole lot as a person and I've learned to appreciate good health. My mom can't walk anymore and has a lot of speech problems. I'm "guilty beyond words"(as kurt cobian once said) because i'm not doing enough as the son and sometimes i don't feel as if i care enough. I'm 18 years old and its more then i can handle with everything else goin on. I get drained phyically and most certainly emotionally. My step dad does the most for my mom and he has been so dedicated towards my mother and i'm forever in his debt. I don't know what to do sometimes and i feel as one day i will regret alot of things. My mother has been through alot in her life before she got this disease and she certainly didn't deserve it one bit

-Richard

[This message has been edited by Nirvana_fan (edited 06-07-2003).]