We are in a similar situation. My grandparents have required 24/7 care since May. While the Hospice people have been trying to convince them they should go to the nursing home for at least the last 6 months, neither wanted to go. My grandmother has Alzheimer's, and every time we think she's getting firmly into those last stages, something brings her back out of it. Twice now, she's been at the point in which she could not walk, had lost some motor skills (could not feed herself), was unaware when she needed to use the restroom, etc., and twice she has come back around to closer to "normal." Our biggest issue is trying to figure out her reality. She has no clue what time of day it is, and she did a lot to wear out my grandfather with accusing him of doing things he didn't do (like changing things that hadn't changed) or keeping him up all night and not letting him get any sleep (because she doesn't really sleep anymore.)
The last time it got really bad was the week of July 12th. She got to where she had moments that she couldn't really talk, and she couldn't walk without someone physically supporting her. Then she got violent and wouldn't settle down, and we just couldn't handle her anymore. She went into the hospital by Hospice's recommendation, fully admited by 4:30am Friday, July 13th. My grandfather, who seemed to be just holding on to make sure she was taken care of, passed away on the morning of the 14th.
Since May, we've tried to find trustworthy sitters. Here, they charge at least $9/hour. We have a good one that my grandmother likes that comes 9-4 Monday through Friday. She cleans, cooks, and makes sure my grandmother is in clean clothes/Depends, eats, and takes her medicine. My grandmotehr has no problem taking her medicine from this lady either. We have bounced around on nighttime sitters and weekend day sitters, though. There was a lady who would sit at night for $50/week (Monday through Friday), but we think she thought she'd just be spending the night, because she takes care of her grandchildren during the week. She doesn't want to do it anymore because she has back problems and my grandmother won't sleep. The weekday daytime sitter's sister took over, but she couldn't work past 6am (which means no one was there from 6-9 unless I could get there, and I go back to work tomorrow, so that's out). Add to that the fact that my grandmother is terrified by this woman, and she's definitely out. We found another lady who came with many recommendations and worked before with an Alzheimer's patitent until that patient passed in May. She comes at night, but has another job that she is committed to three nights per week. That one recommended her mother, too. The mother came in as a weekend day person (she is an LPN and used to work for a nursing home in the memory loss ward or whatever you'd call that); she's the one that was there when granddad passed. Now she can't do the weekends, but she works the two nights per week that her daughter can't work (Thursday and Friday).
That leaves us still looking for someone for the weekends. We did have it down to where we only had to spend the night on Saturday nights, but now it's all weekend from 9am Saturday to 6pm Sunday. Mom and Dad go over every evening (4-6) to see how her day was, make sure she eats a decent dinner, etc, then we're supposed to be alternating weekends with Dad's brother, but he tends to forget it's his turn. Then Granny doesn't act a lot of days like she knows us or wants us around -- she snaps at my DD8 and definitely doesn't want her in the house, but for me to go during the week, DD has to be with me.
I've got to say that I've edited this twice and I still wind up with what I think is too much posted. But, hopefully, it can give an idea of what it can be like to go through in home help. We are having a hard time gettig anyone who wants to go, plus it has to be someone who is familiar with how dementia/Alzheimer's works -- are you going to be hurt when tomorrow she's mad at you or doesn't know who you are and randomly accuses you of taking things, calls you horrible things, and tells you to get the heck out of her house, and sometimes 5 minutes after she has told you how much she loves and adores you. It has been incredibly stressful watching her get mad because no one was coming in to help with "all these people in the beds" (she thought she was volunteering at the VA Hospital) or beg to be taken home to a place she hasn't lived since she got married over 67 years ago (and then get upset because she can't figure out how to call her daddy -- dead since the 70s -- or momma -- died in 1988 -- to tell them where she is and ask them to come get her.) Hasn't been much of a restful summer at all.
i know it's not for everyone, but praying really does keep me sane. you and i both have really full plates right now, but we'll rise above. 
as dory says "just keep swimming, just keep swimming".
to you bushdianne
