Is there a caregiver survival guide for us who care for a loved one who is NOT elderly?

Joan - do you have a local community volunteer group? like lions club, rotary, knights of Columbus, etc? Often they have folks who can volunteer to help. Are you part of a church or other religious group...perhaps they can get volunteers to help out. Call the council on aging and find out what supports might be in your local area. Do you get Meals on Wheels? At least that would be some low cost meals that you wouldn't have to make...and at his age and disabled he qualifies you might as well.
As far as the un-diagnosed problem...stick with it. When my husband had cancer about 9 years ago, we started a notebook and got copies of every test (yes including color pictures of his tumor) and blood work results and it went into the notebook. It really helped as we went to several different docs for diagnosis and treatment. Plus the book helped me to see the progress we were making (or not). He has chemo & radiation followed by surgery and more chemo but is still with me today! Hang in there!
Does your husband have a good Primary care doctor? can He/she help?
Prayers to you and your husband.

He should be on Medicare by now and collecting SSD for himself and wife and underage children. Call your nearest Social Security office.

Hi Joan. Sorry to hear about your difficulties managing the care of your husband. We have a Home Care Survival Guide, (that you can find at nightingale.net/hcsg) that might help you. It's a collection of videos that we've put together. We're nurses who have seen many a family caregiver like you struggle to find the skills to know how to care for someone at home. It covers all the basic home care skills that you'll need, such as feeding, bathing, safely walking/mobilising, recognising deterioration... Hope this helps!!!

If your husband is on disability he is automatically eligible for Medicaid. In some states that is given automatically and in some states it must be applied for. Is he permanently disabled, do you think? Without a diagnosis that may be a hard question. That would help a lot with the financial strain.

Have you had a social worker involved? Contact one from his most recent hospital stay. Or call your county's Human Services Department and ask for a needs assessment.

You shouldn't be facing this all alone!

What is his diagnosis? Is there a chance he will get better? Sounds like he needs more care than you can provide. If you are unable to care for him you can tell staff at the hospital and they will help to find an appropriate facility for him.

Are you saying that with all the hospitals and doctors, there is no diagnosis? Oh, bless y'all's hearts! I feel for you. Is he able to do anything at all, or is he housebound. I just can't imagine. While he's not elderly, there may be someone on here who has some thoughts for you that might be helpful. It's kind of quiet at night and will pick up in the morning. If there's no response tomorrow, do a reply to your own question and that will bring it back up to the top. Hugs to you.