I love this forum.
I've been lucky, my life has been good. I've experienced and am experiencing deep pain, but my childhood was good, I love my parents and they did a great job, and I've had a good life all things considered. But I know a lot of people aren't that lucky. My girlfriend had some trauma in her childhood that has resulted in profound effects on her life. Sometimes I feel like it's really easy for me to talk about solutions to complex emotional issues. I hope for everyone experiencing trauma that you can find your way out of that. You're beautiful, and you're wonderful, and you deserve the same things everyone needs.
My dad though... it's so fucked up. It's the saddest and most horrifying thing I've ever seen. My dad is a great man. He worked in and eventually ran the family business on his side of the family, the president and CEO of a manufacturing plant. A while back, their main client decided to outsource to China, and they weren't able to recover, and the company eventually went under. My dad didn't take a salary for 2 years because he told me, our family is fine, we've been fortunate, but my workers and their families are not gonna be fine without a job. He worked himself to the bone so as many of the people who depended on him would be able to keep their jobs as long as possible. He cared so much.
A little over 5 years ago he started to notice that he couldn't raise his arms all the arm up, and after a little while of this getting worse, he was diagnosed with ALS. Over the past 5 years his life has transformed into hell. He and my mother have always been an amazing couple, very sweet and into each other, they were best friends. He had just retired, and they were talking about all their plans to travel and do all the things they always meant to do. In addition to that, my dad is the kind of guy who loved taking care of other people, the last thing he's ever wanted was to be a burden. But ALS has basically reduced him to a brain inside a dead body. He was really positive about it when he just couldn't lift his arms, and when he started to lose his balance, and when he had to use a walker, and he could manage to do normal things for himself.
But for the past 2 years, in increasing amounts, he's been entirely incapable of doing absolutely anything for himself. He's almost entirely paralyzed, and he's months away from losing his speech, he's hard to understand already. He can operate his hands minimally with a lot of effort to operate his chair, but he has no plans for or desire for the computer speech thing where it tracks your eye movements. Besides his hands (which are fading), he can turn his head slowly and move his mouth enough to barely talk, and he can move his eyes and eyebrows. He is on assisted breathing almost all the time, he can't go more than an hour without it. My mom is his primary caregiver. She has some help now but she seeked out help too late and the damage is done. It's crazy, he's anxious all the time now, he can't even scratch an itch on his face or do the most basic of things for himself. He would have died 2 years ago if he didn't have technology. My mom has to lift him up on hoists and help him take a shit, and stick preparation H up his ass. It's so degrading for him, and the worst fucking part about it is that their relationship has utterly changed because of it. She has this resentment towards the situation that she sometimes just blatantly turns towards him. I can barely stand to see it. This Christmas time while I was visiting, it was almost too much to bear. She so obviously disdains him, partially, not totally. Usually she is really good with him in the morning and afternoon, but she gets burned out at night and I can't believe sometimes the attitude she gives him. Like, dude, I know I can't understand what it's like for you, but do you think he WANTS to have to ask you to do all this shit? FUCK no! This is worse than death for him. He wishes he could have just died suddenly so you would remember him from before ALS wreaked its particular horrific form of personal hell on you. His every moment is pain and hurt, he is experiencing hell. What the fuck is wrong with you?? I can't even describe it but it hurts my dad so much. But then, god it's so intense to be there for just 10 days. She does it 24/7/365. And it's really intense, it's like you're always on edge and in this state of horror, and not 5 minutes go by without some sort of need from him. And what sort of incredible pain does it cause to see the degeneration in the love of your life? I have a really hard time with it too, but I try to imagine this happening to my love, and I don't even want to go there, that would be so much worse. My mom has always been religious, in the best kind of way, she's super involved in her church, went back for a master's degree in something related to religion, and she believes in love, she has none of the trappings of destructive religious attitudes. It's always brought her a lot of happiness and peace. But it's so clear her faith is being tested. Personally I am not religious, I have my own sense of spirituality, but it's causing her so much anguish, it's terrible to see.
Basically, fuck ALS, it's a horrible disease. Absolutely awful. Everyone treats him differently I feel like, except me. My siblings and mom all see him regularly, but I don't. Every time I visit I try to talk to him the same. I show him that I recognize that I know that he's still in there even though he's more helpless and requires more care than an infant, that he's the same person. It's all I can do. And what the fuck is he gonna do when he can't talk anymore? I shudder to think, he is so uncomfortable already, he starts feeling intense pains and has to be adjusted for example, he has to explain to you what he needs, otherwise how would anyone but him ever know? How does anyone know if he has an itch on his face? I think he has wanted to die for the past 2 years but he can't say that, he can't bear to do that to us, especially to my mom. But I kinda feel like she halfway wants it to happen. And he knows that.
It's just so fucked up. The most tragic thing I have ever witnessed. My dad, of all people, does not deserve this. He lived his life for others, he was as close to flawless as you could possibly ask for, he is SUCH a good person, I will forever respect what he has done in his life. And his life is ending in this long, protracted personal hell, and it's so fucked up, and there's nothing I can do, or anyone can do.
