Serious illness causing marriage difficulties...advice?
My hubby and I have been married for 6 years, together for 10. We lost two children to miscarriage and now pregnancy is not an option due to the potent mix of medications I'm on, so children are not now nor will ever be involved. We love each other and do not want a divorce, but both face overwhelming challenges that are tearing us down...
A year and a half ago, at age 34, I was diagnosed with a serious, incurable and crippling disease, and became unable to work...this disease won't kill me, it will just leave me unable to move any part of body. I loved to work and never had any issues with putting in hours...to describe me as a bit of a work-aholic would be accurate. My hubby on the other hand is a very creative, type B personality and does not enjoy the 9-5 grind. He is currently too stressed by his job in the tech industry and is asking for a "demotion" back to his previous entry level position...he tells me he has no interest in working more than an entry level job for the rest of his life. I knew he wasn't good at putting his nose to the grindstone when I married him, but this wasn't a problem when I was able to work. He prefers to spend his time in creative pursuits such as playing music. Other than his lack of motivation to work at higher paying, more stressful jobs, he is a very good man (kind, loyal, honest, sensitive regarding my physical difficulties).
Financially we're going under. Five years ago we bought a house that requires two incomes, and now we only have one, and it's a lower income at that. My medical bills are about $1000 out-of-pocket per month WITH insurance. With him making so little money, we will soon run out of savings and will not be able to afford treatment for my disease, which means I'll likely need nursing home care for the rest of my life (that could be 50+ years, and we can't afford that either). If his boss becomes angry that my husband has asked for a demotion and fires him, I will be without medical insurance and will never again be able to get any due to my pre-existing condition.
I am totally at a loss as how to deal with this situation. Part of me wants to scream at hubby to get off his arse and be responsible and WORK, as my financial need is so dire. The other part of me knows that working hard and consistently is something my man was never good at, and to expect this out of him now is unrealistic and unfair. I do not want him to "martyr" himself for me by working a job he hates, however, facing life in a nursing home for 50+ years has my knees shaking with fear. There appears to be no way to resolve our problem...either he has to put in hard and long hours, which he says makes him contemplate suicide, or I lose my functioning body.
Lately I've been unable to support him emotionally at all...I don't yell at him, but I am angry and frustrated and no doubt this comes though. I feel resentment building...and I feel guilty and helpless in that I am unable to work myself, which would resolve this situation. Any words of advice? How do other people survive situations like this and continue to have a loving and supportive marriage...or is that just an unrealistic fantasy? All advice welcome and appreciated.