I have a great support network right from the start. I'm very very lucky.
My son's best friend is an EMT and once a month he takes him to the movies. This gives me an afternoon off and I don't worry because if anything happens Bill knows what to do.
My daughter helps with little things. She calls every day to see what I have planned for the day. On her days off from work, she stops by and visits with her brother for about an hour, and then takes half an hour to help with the housework. She won't ask what needs to be done, but will take the clothes out of the dryer and fold them when the buzzer goes or empty the dishwasher or whatever.
My husband helps on weekends. Sweeps and mops the floors, vacuums. He gives our son a shower on Saturday morning. Since Wayne takes duretics and has to go potty so much at night, we have a bucket for him to empty the urinal into. Hubby empties the bucket every morning and washes it out. When I had to go to my dad's for 4 days, hubby took a weeks vacation and took care of Wayne.
The ladies at the church take turns and bring us a meal once a week. So, once a week I don't have to prepare dinner.
The guys at church built a handicap "shower room" for Wayne.
Another of Wayne's friends comes over every Sunday afternoon and plays games with him.
All of this continues even though we have hospice now. And I have to say, we are very pleased with hospice so far. The nurse comes on Tuesdays, calls on Thursday to make sure everything is okay and if we need anything for the weekend. Social services came out with all the paperwork we need for his living will, POA. She spent about an hour just talking with my daughter and I about how we are doing. She also asked about arrangements for funeral and offered to go with us to make them.
So, I would say that I have a really good support system.