Thank you to everyone for your replies and support. At this point I don't know what else to do.
Jason is on medicare. Currently the ASL clinic sees him ever 3-4 months. ALSA helped us fast-track disability, but SSi was approved then taken from us, and now SS says that they payed us $450.00 too much, and so they are deducting it by month from his disability. Not sure about getting healthcare in to help with his baths, but with me being in the third trimester of pregnancy, I really need relief, and if he isn't willing for his or my family to give him baths, then I need to get health care in here. I think he would be classified as bulbarian as it was the 2nd symptom that started, and now at this point (just 8 months later) his speech is to the point where I have to translate for EVERYONE. Still waiting on his motorized chair to be built. They said it would be 45 days until he gets his communication device. We are on a waiting list for a lift chair. We currently have a patient lift, hospital bed, rollator, and he has braces that he doesn't wear.
I doubt my church seriously knows how they can help, or that people would be willing to help in the ways that I need the help.
His family is adding more stress and emotional worry to my already full plate. His mom has thoroughly ran her mouth to the family and ruined my reputation and I have heard rumors of threats that as soon as my husband passes, they will be looking to gain custody over my children. My husband doesn't see it, doesn't hear it, and thinks that it would never happen, because he thinks the best in people.
That being said, he is getting to be really hard to deal with. He has dropped his roll as husband.. PALS seems to define him, and so I am no longer his wife, but his caregiver. My feelings don't seem to matter, my high-risk pregnancy with which I am on restrictions now doesn't seem to phase him, when he demands that his needs be met. He doesn't talk to me as a wife, or a human being, just merely concerned that his needs are met. Even the strife HIS MOM has caused, he has told me he just wants it to end. Like I am suppose to fix what HIS MOM did, when she is the one that needs to clean up her mess and apologize.
My parents surprised us by saying they would be gone 4 days this weekend. They are celebrating thier 44th anniversary. Well, while I don't begrudge them the trip, I am on restrictions, and Jason is needing more care then I can give alone, and my son is more then I can handle by myself at this point. Just feel left and abandoned with EVERYTHING on my shoulder, even though I am on restrictions myself. But my health, or the health of my unborn child doesn't seem to matter to anyone.
Just soo frustrated, soo worn out... feel like I have been abandoned and no one is here to help.
~ Becca