How to balance caregiving and working full time?

SueC...Thinking outside the box is what I had to do many times with my husband.
Lots of times when I hear things like what cccquilter is going through it puts me through a whole range of emotions.
Frustration.... that it is so difficult to get the help that is wanted and needed.
Anger.... that we have to force or are forced to do things like divorcing a person so that they qualify for aid, or impoverishing someone or at least spending down a good portion of savings or penalizing one spouse that has saved, particularly if they entered into the marriage later in life.
Sad ..that in a great country like ours there is sometimes no option but for a working spouse to quit their job in order to stay home to care for a family member. That often results in loss of self by way of removing socialization at a time when it is needed, loss of income and that may result in loss of home, or at least the possibility of having to go on some sort of welfare. Assistance with food, housing, utilities....
While Utopia does not exist there is no reason for ..
Children to go to bed or to school hungry
For our elder to go to bed hungry
For ill people to not get help that is needed
For families of people that need 24/7 care to go through additional stress when it comes to trying to find ways to get the help that is needed. 
My list could go on but enough for now....

Stepping down off my soapbox now.....

I understand that respite would be nice for me. However, he would be miserable and I would be the target of his ire. Not worth it. He is not near the end. Yesterday he said I need to either get better or die, and neither is happening. He is frustrated at being so limited, but there is nothing that can be done about it. He is on probably the best diet he can be on; very little sugar and lots of green leafy veggies, meat enough to support his dietary needs, yogurt and fermented foods for his digestion, which is always dicey because of the g-tube. He is going downhill; we can see it. He would like something to happen, one way or the other. He is prepared as much as he can be for his own demise. He is tired of the in-between.

You need respite. It was hard for me to come to the understanding that it is not all about him. If something happened to you because you did not take time for your self to be able to take care of him what would happen to him. Think of it that way. My husband would have been a tyrant also. I finally hired an aid to come in twice a week for four hours (paid $12.00 an hour). I told him she was there to help me with the housework while I worked but she was really there to keep an eye on him and keep him company. She did the laundry, made the bed, cleaned the bathroom all while being there and watching him. Yeah I lied to him but it worked. Then I finally took him to day care twice a week. Of course he did not want to go and people would say don't like him run your life but how was I suppose to get a grown man out of the house to go to day care he is not a baby that you can pick up and take him there. So I lied again. I told him he was going to volunteer to help the old people at the center. The director at the center was excellent in helping me with that. It has been three years that he has been going and he loves it. Wants to go on the weekend. Please, please investigate more in getting him Medicaid. I really think he can quality. You are considered the community spouse and they cannot put you in poverty because he is disabled. Yes I know there are income levels but I would still look into it. I work full time and make a nice salary but still under the income level required he gets less than $2,000 a month in income so they went by that. Once you get Medicaid, they will pay for an aid to come in and help you, day care if you can get him there and will pay for respite. I have someone come for 7 hours on Sunday for respite and 2 hours on Saturday.

Thank you. Day care would be difficult since I haven't driven for over 8 years now (no car) and he should not be driving; our van is hard to get in and out of, so this is not a good solution. I will ask the social worker again about Medicaid. Thanks.

How do you get him to the doctor appt without a car once he has Medicaid you can get free transportation to the day care
Best wishes you really need respite or you are going to crash

He doesn't do doctors. Hospice does have doctors, and outside doctors are not allowed on hospice care per government rules. If he needs a doctors care, we call hospice and they send out one of their doctors to the house, so that is not an issue.

When my husband went on hospice care, I was asked if I wanted respite. (I think it was for 5 days, but I'm not sure.) I said I could have used respite last year, or three years ago, or nine years ago, but now that we are at the end, I would stay with him. I did keep the PCA on, even though my husband wasn't awake much. Sometimes I just napped while she was there.

Maybe I missed this in the previous posts, but doesn't hospice offer you some respite time, cc? In your situation I would definitely take it!

Thanks. I will ask.

That's what I was mentioning. I do "shifts" where the nurse stays in the patient's house to care for the patient to give the family a break. This is usually done for pain that the family can't control, labored breathing or family crisis (unable to cope with the load).
Just a tip, say that you are in crisis mode and that you can not handle the situation.
As I understand it, not all hospices have this service to relieve the family and it's only for a limited amount of shifts, but it is something.
Check to see if your hospice offers "crisis care" shifts.