My son helps. My husband has Parkinson's disease and congestive heart failure. The stress on me is mounting up. His son and daughter, with whom I have a good relationship said when he came out of the rehab center after a broken hip that they could not commit to 2 hours a week to relieve me. My own son comes over once a week and when there is an emergency is the one to get them mobilized, which causes tension. How do I get them more involved and realize that this is a whole family situation.
Accept your son's help. Tell him how much you appreciate his help.
Now, whether you were childless, had seven helpful children, or are estranged from the rest of civilization, you need help. You need to get regular breaks. You need to be able to go to your room and read or nap and have someone else look after your hubby for a few hours. You may get some occasional help from your stepchildren, but it does not sound like you can depend on this regularly. So take matters into your own hands and make other arrangements to get what you need.
Adult day health programs can be awesome. In-home help can make a huge difference. Arranging respite care for several days may help prevent burnout.
If the grown children lived right down the street, maybe they could commit to some time. But if they live across town, you have to take in commute time, and that could add an extra hour of time... making it 3 hour commit time.
Depending on the grown children's ages, they could have still have children at home that need their attention plus full time work, and yard work to contend with on the weekends, etc... or if they are older, they could have their own age decline issues.
If I were you, I'd look at it this way: if you have enough money to pay a caregiver, it's money well spent. Yeah, we hate to spend it; but it's far less expensive to give yourself some respite time than it is if YOU end up in the hospital and your husband has to go to a nursing home.
One of the things you REALLY need to do is talk to an elder law attorney so that your assets can be best protected, assuming you have some. If you don't, then Medicaid will step in and provide services once you get accepted on the program.
You don't say how old your son and stepchildren are; but I assume they're all adults, so I further assume they're either employed or have families of their own. While 2 hours a week is not enough relief for you, I can imagine that for them it's too much - not the '2 hours' bit, but the 'commitment' bit. You can't oblige them to be helpful, you know.
This is a tricky diplomatic situation, and one you have to handle at a time when you must be very anxious, sad and tired to start with. I do sympathise, truly.
What about the good ol' family conference, ideally combined with a nice lunch or dinner? The aim would be not to establish a timetable for them to keep, but as you say to consult and involve them. You can air subjects like respite care, perhaps day centre activities for later on, relief for you during the week and at weekends - let them come up with suggestions. Also this would be a good time to inform and educate them (gently) about what path their father's health is likely to follow.
Above all, let them show their father that they care about him; and let all three siblings feel part of a family unit. Softly softly catchee monkey, if we're still allowed to say that nowadays?
Perhaps they are just as wore out from life's stresses, as you are - or they have young families and full time jobs and a house.
But, one thing to consider is, what will happen if he outlives you? I encourage you to make those arrangements now. My sister was a caregiver to our mother and mother outlived her. (By the way, my Mother is healthy and happy in a nursing home and my sister died trying to keep her out of one.) Sorry, to start in on my story. Good luck. I agree that you need some help. Can you hire someone?