I am a full time caretaker for my disabled husband. A rundown of our history...
Before we got together and even when we did, he was in the military and I was in college and then working. I quit my job due to his health issues at the end of 2005 (after only a few months of work at my first "real" job post-college). We lived with my mother-in-law and I had lots of savings, and it wasn't a hardship for me to take work off to help him go to therapy, etc. I did think I was going back to work but was unable to find another job.
He looked like he was improving; I got pregnant in the summer of 2006. I was unable to work during pregnancy because I was on bedrest, or during our SN son's first years. With therapy, inpatient programs, etc., DH improved some, and we were hopeful. He was getting a small disability payment. I inherited a house when my father died, and we moved there. The disability checks barely but did cover our cost of living expenses, barely. He went to school and graduated last spring. He got a decent job, but his ability to work ended right at New Year's when he was hospitalized again.
He will be unable to work again, and I am unable to as well because I am his full time caretaker. (And believe me, he needs it.) We also have two preschoolers, one of whom is on the spectrum and was receiving weekly therapy for a year or more but he has since graduated therapy and is thus not coverable by social security - but he can't attend daycare either because he is considered "not a good fit" - I'd have to look further into getting more evaluations for him, but right now that's not even a priority, as he's doing fine at home. Not like we can afford preschool for him anyway - the state childcare assistance only works if both parents are working... H has a note saying he can't parent the kids but I also can't work because he needs a full time caretaker (he was just released from the hospital not long ago) and that's me. But the state doesn't care WHY I'm not working... just that I'm not.
In the meantime I'm trying to get some sort of verification that I am a full time caretaker and not just unwilling to work. But even when I was looking for a job actively, every day etc I couldn't find one because I have no job history and it's a cruddy market - despite my education, etc. No one cares that I had an excellent internship back in 2004, y'know?
We are currently in ridiculous debt because I had a miscarriage and it involved stupid amounts of money that Medicaid will not cover, and won't because it happened a year ago and it is now in collections, and we have moved out of state. So that's like, 20,000 worth... and we have no income. H's disability comes to about 14K a year and barely covers our rent here, never mind food, utilities, gas, anything.
He has applied for full disability from the VA and from Social Security, but that could take up to a year or more to go through. In the mean time we are not eligible for social programs because we have too much assets - because we still own our old house (we can't afford to put it up for sale) while we are staying in another state for his medical treatments. We are actually going to me moving clear across the country (from Washington state to Florida) incurring yet MORE bills, breaking leases, etc. when we have no credit anymore anyway... just to stay with my mother because we can't afford to live on our own here. He can get treatment there at the hospital system.
We have always lived within our means, VERY frugally, and never had a cent of debt before this past year with the medical bills, etc. I am just despondent over this, and to top all the stress off, they just discovered H has lesions on his brain as well, which look pretty serious, and he could essentially drop dead or become paralyzed suddenly. That's a really good chance, according to his doctors - and since it involves his brain stem, there's very little hope. He's already experiencing symptoms which show that it's really serious by now. We are still only in our 20's. This is not supposed to be happening.
Basically... where do I go from here? I want SO, so much to be financially independent, but there's no way to do it.
We can't even afford to go back to where our old house is and sell it. That's what has to be done but I can't just up and leave the husband here while I go off there. I've tried to generate income from home in various ways but I can scrounge a couple of hundred a month maybe, and that's at the expense of sleep - and between caring for everyone I'm down to about 3-4 hours a night as it is. We don't have any family except for my mother, but she's a very toxic individual and I'm not at all thrilled to be moving in with her under her roof, but we have literally no other option at this point.
We can't go back to our old house. That's the only thing that would make SENSE but, I don't want to get into the reasons why not, but we can't.
I think with time it will work out because H will def. get the 100% disability, eventually we will somehow sell the house, and even if we have to pay off our debt with it and take a significant hit, we can probably still afford to buy a house, even a more modest one.
But basically, what happens if he dies? That's my biggest fear. I mean, it's NOT about finances that I'm afraid he's going to die, it's just a horrible thought on so many levels, but since this thread is about finances... how on earth would I then go about life? I haven't even worked and have two babies to support, and I doubt we'd be getting much if anything in Social Security payments since we are so young and H only worked for like... I dunno, 6 years total? What would happen financially? How would I be able to be completely on my own, financially, emotionally, etc. to care for our babies, when practically all I have done for my adult life is be an unpaid caretaker for either my husband or son? Incidentally my father was ill from when I was 8 until he finally died when I was pregnant, so all my life it has been like this, this stress. I am falling apart and I'm unable to see clearly right now. I know, I know, "get support" sounds easy to say but I can't even leave my husband alone, nor do I have money for a babysitter or gas to get anywhere supportive, and we're going to be moving soon anyway, so it's not like I can just up and find a support group or get a mental health break.
Everyone is counting on me, his doctors are all just assuming I can support us financially until the disability goes through, and that could be months - theoretically even years - and if God forbid he dies, then no more disability, the end, that's it. But I can't find a job. Literally. When I was looking for a job, and I promise it was a good effort, I couldn't find one to save my life. I was applying at low end jobs, mid-range jobs, entry level, this that, cold calling, networking, trying to be self-employed, trying to freelance or get doula clients, etc etc - NOTHING. Not one client, not one interview. I don't get it; I never had a problem back in the day when I was looking for work. I have college and some grad school under my belt, a varied job history (though they're high school or college jobs) etc... But no, nothing.
I am panicking and need some clear thoughts on how to proceed. Not just immediately but in formulating a long term plan - if one can plan around this sort of situation...