Hi Kristin!
What Amy said!
I used to work as a geriatric care manager/social worker for caregivers and their loved ones. Now I am still a medical social worker/psychotherapist, and my wife, who is 12 years older and has MS, is my care recipient. I'm juggling work and caregiving as well. My advice is usually the same:
1. find out what services are free and low cost to you and him. Even though he is not a senior citizen, each county has access to an aging and disability resource center (ADRC) that is state and federally funding to help you and him. Is he a veteran? Look into that, too.
2. Expand the caregiving circle. Church? Relatives? A former coworker of his? His best friend? See if folks can commit to hanging out with him for a couple of hours or more, if they are reliable people. Complement the informal help with paid help. Care.com has less expensive paid caregivers than the usual agencies like the Visiting Nursing Association and Home Instead. You have to be a wise consumer. I believe Amy actually hired her own folks directly. You might need an accountant or tax advice. I know its complicated and i'm sorry about that.
3. Make sure you get care and support for you: monthly massage? A psychotherapy who can hear your frustrations and plans and coach you into better self care. Time to see a friend at the local coffee shop? Time for worship or meditation? You must build that in or you will fall into exhaustion and resentment.
4. Join the AARP Family Caregivers group on Facebook if you do facebook. Very fast advice and support.
Please take care of yourself. Social isolation is bad for your health, and is one of the things most caregivers have to fight against.
Jane