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Apr 11, 2005
hi everyone I haven't been on this site for a long time, it was just getting to hard to read everyone's story.
My mom has ALS it has been two years now and she is dying now.
She is in the hospital and is waiting to be placed in a nursing home.
She hasn't been able to eat anything for about 5 months now and has had a feeding tube for about 9 months.
She is suffering, that is what this disease does, it makes you suffer, she doesn't deserve this hell, she's such a good mom, and I just don't know what to do. I'm sorry I might not make much sense I'm just so sad because in a way and I hate to say this but I do want it to end for her.
She's such a brave person she's even donated her body to science after her death so she can help people in the future.
This is the first weekend that she hasn't been with me (I took her out of the personal care home every weekend)
But her needs are greater than I can do now and it makes me feel powerless.
I hope she goes soon .......I'm sorry to say this

It can be so hard to see someone we love and care for so much suffer and go through such hard times. I know how that is. My dad is on a ventilator and it can be really tough sometimes. It sucks. He is so young with so much more life to live, and now he is stuck to a vent. He was in the hospital for a month back in Feb. and we did not know if he was going to make it or not. I did not know what to think. I wanted him to keep living because I did not want my dad to die, but on the other hand, I did not want him to suffer and I would rather him go to the Lord than suffer here on earth. This disease effects the person living with the disease and everyone who loves them. It rips your heart out at times. God knows the exact day and time that He will take your mom. It might be today, it might be tomorrow, but whenever it does happen, it will be when He decides. In the meantime, all you can do is love her and be there to support her through this scary part of her life. Do not feel bad about wanting your mom's ALS to end (and by end you mean die). I think that you just don't want her to suffer anymore and you want her to be at peace. You want her not to live like this and that is understandable. When this all started with my dad, I was not ready for him to go. I think now I have come to terms with it. Don't get me wrong, whenever it is my dad's day to be with God, it will be the hardest day of my life. But, I will know that he is no longer living in a way he ever imagined and that he will be whole again. My dad has put up such a hard fight, and I don't ever want to hold him back from going to heaven where he can be free from ALS. I don't know if you believe in any of this, but this is what helps me get through the tough times. I hope that you will find some peace with what is happening. I am sorry that you are going through this.
Hi Sandra. I remember the name snowball from a while back. I am sorry to hear that your mom is not doing well. When we get this disease we all hope and pray we will be one of the lucky 10 % that beat the 2-5 year life span. Even when the time comes it will not be pleasant and even though you will be happy to see her torment end the sense of loss will be great. Do not for one minute ever feel guilty for your thoughts. I know you just want her to be at peace. It is not a bad thing to feel this way. Our hearts are with you during this difficult time and we understand what you are going through. Take Care. Al.

My heart goes out to you. I read your post and it has taken me most of the day to be able to reply to you. The tears just kept coming all day long when I thought of what you are going through right now. It breaks your heart it really does. I wish I knew the right words to say to you. To have a mom that is so special is precious. It is painful to watch a loved one suffer. Your mom is very blessed to have a daughter who cares for her so much. Please know we are here for you.

Sandy and hope.

My thoughts are with you at this very sad part of your life. I am a complete stranger, but hope you know I am thinking of you and hoping you find the strength to get through this.

thanks everyone

Thankyou for replying back to me everyone
I'm just taking things day by day at least I know my mom will not be released from the hospital until they do find long term care for her, so it makes me feel better knowing that her needs are being taken care of.
She's very very uncomfortable, and I wish there was something we could do to at least make her more comfy.
She's starting to lose the ability to write now and sometimes her thoughts are quite scattered do to all the medication that she is on.
It will be a very sad day when she loses the ability of her hands, but we can see it comming.
One of her doctors lost his dad to the same illness so it's nice to know someone who can relate to what my mom and me are feeling.
Well off to the land of work
have a good day everyone

Hi Guys,

I prayed and prayed for Henry to outlive the odds, and for the most part he did. He lasted almost 8 years. Near the end however, I prayed and prayed for the Lord to take him. He suffered so much near the end that I was being selfish wanting him to stick around for longer, and he did live longer, just for us. That is something that I think that most of us do not do near the end of ones life. We SHOULD give them permission to die. I know that sounds a little harsh, but, I think that it is something that the dying person needs to hear. Henry was ready. I wasn't. Just enjoy each and every moment and no matter what everyone says you will never be ready to release. That is human nature, we simply will miss the one we love, and that is the toughest thing to cope with. In retrospect, dealing with als was easier. Hang in there, peace will come.

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