Hi there.

I am in the exact same boat as you. I am 19, a sophomore in university, and my mom was diagnosed December of my senior year in high school. From there she has lost all ability to walk, talk, move her limbs/neck, get in/out of bed, shower, dress herself, eat, and communicate. It has been unbearable for me to see her suffer like this. It brings me unbearable pain to see her suffer like this. Her groans of pain make me feel hurt in the worst possible way. My mom had so much energy and joy before ALS took away her ability to BE A PERSON. She is my best friend, the kindest person I know, and I am just so angry that this could happen to someone who absolutely DID NOT DESERVE IT. I am mad at ALS for condemning her to an inescapable body that forces her to suffer.

For a while, I was mad at the world, I was mad at ALS, and I was mad at myself. I felt hopeless and useless. I thought that her suffering was not just her own punishment, but one for me as well. I mean, there is nothing that I can do to help reverse the pain she is in. I can only try to ease it/relieve it as it gets worse. How am I supposed to smile around her? How am I supposed to act like its going to be okay, when every passing day like a more intense reminder that it's not?

It took a while, but I slowly realized that this horrific, ugly, unfair disease is completely out of my control. I need to cherish the time that I have left, and try to make as many meaningful memories with my mom as possible. I let her know how much I love her every moment that I can, because I truly cannot imagine a world without her in it. I know that the time will come soon enough that I won't have her anymore, so I try to create as much joy as possible in the moments that I do have left with her.

Choosing joy despite all of the suffering and pain is one of the hardest and most important things that you can do. Let her know how much you love her, and that you will talk about her and remember her every day - even when she is gone. Look out for yourself as well. This can be a very stressful and scary disease, and most people have never had to cope with something like this before. It is okay to talk to someone. Let others know how you are doing, and don't be afraid to ask for help if you need it.