I am very sorry to hear this. Is this a big change from your previous relationship? Does he have other issues or is he under medical care? Some people deal very badly with adversity, and we do see some diagnoses that end relationships. Is he doing your feedings well enough? Nutrition is really important in ALS. Of course, so is hygiene and everything else you are lacking.
I assume you've already tried having another family member, or a friend/counselor/minister he trusts, talk with him about this, but if not, it's worth a try. If your clinic and/or local ALSA chapter has a social worker/care coordinator, they might have some ideas.
But this doesn't sound like a situation where as ALS progresses you will be receiving adequate care, nor does this sound like a good situation for the kids. I'm also worried that if he's not in a very stable place right now, that your wellbeing might further deteriorate.
But I completely understand about seeing the kids. So I am wondering if there is a family member or friend willing to house or set up both you and the kids somewhere with in-home help (or maybe two nearby places where you know people and you could be near each other). I have no idea what you/your family's financial resources are, and how wheelchair-accessible your current/possible future homes are, but that's where consulting local resources about possible help might be an advantage.
Or, you could have in-home help and your husband could be the one to move out.
It may take a third party to accomplish this -- someone willing to lay down the law to your husband and say, "This is what will be." If you go into your family, friends, neighbors, kids' friends, etc., usually there is a person who is willing and able to help in that way, whatever their role in life. It does take disclosure that is more difficult than talking with people you know well.
You know him better than I, but if necessary, I hope you will be frank with him about the number of people that know about his abuse and neglect, and I hope you are being frank with those people about what is going on.
If it has or does become clear that your husband is unable to change his behavior, then I don't think staying where you are, how you are, is really an option. Since it appears that you can keyboard still, I would meet with an attorney via video/text about your rights in your state, since I don't know how far your husband is prepared to go in terms of the kids. Many cities have a disability rights group with attorneys as well. There may be documents you should file or financial actions you should take in advance of seeking to move or getting him to.
If you do decide to make a change, make sure you remove your husband as an emergency contact, de-authorize any access to your health information, etc. Your local women's center or attorney can further advise you on cutting the cord if that is your decision.
Please do remember, it absolutely is your decision.
Best,
Laurie
