Day to day living is a challenge!

It sounds like you are going to have to sneak in a person when it comes time. You'll have to be there with the person until your mother and brother are used to him/her. If things go well, they may not miss you when you're gone. It sounds like you're doing fine at the moment, though. It does feel good to be able to talk to people about it, though.

It's a little off the subject, but I really don't like the word "respite." It sounds so clinical and solemn. Maybe we should just call it "me time" or "goof off time" -- something not so dramatic.

Thank you for your concern, guys. I have no family within 100 miles. The nearest relative is Mom's brother, who calls twice a year. Her favourite nephew, who I thought loved her to death has never contacted us since I sent him a message about her illness. Even my own friends have stopped communicating with me. I guess people figure if they don't see or hear it, it doesn't exist.

It might be tough to have someone in, not because there is no availability, but because of the personalities I'm dealing with. Some time ago when Dad was still alive and Mom was normal, they found a male respite worker willing to stay with my brother on nights when they wanted a night out. Well, he took an absolute fit. So, whenever they wanted a night out, I would stay with him. I told him recently that I might have to have someone come in when Mom gets to the point that I can't take her shopping. He did not look pleased. Plus, if I'm not within sight for over 15 minutes, Mom gets upset and agitated.

Surprisingly, I'm doing ok. I don't feel burnt out......yet. lol I'm learning every day what works and what doesn't. Oddly, even though Mom is worse, I'm more at peace with all of this now, than a few years ago. Once I get everyone to bed, I spend some quiet time in my own space for a couple of hours each night.

The only thing that really bothers me is her sundowning. She becomes extremely agitated and makes absolutely no sense when she speaks.

And thanks again for your concern. :)

Oh wow. thats heavy. is there anyone you can call on for some help or for a few hours off? one patient is hard enough, two at the same time must be exhausting you. Try some of the organisations in your ara to get some help. here for instance, apparently they have social caregivers that come and sit/care for a few hours at a time once the patient has reached a certain diagnosis, so the principle caregiver can have some time off, and it gets paid for by the state.

Are you able to get out at all, donnacecilia? Is there any other family members to help? There has to be some way that you could get away for a while. It sounds like your caregiving chores are 24/7, and you certainly need some respite time. I hope that people more experienced with organizations that will provide respite care will have some ideas for you. You need a break at least 1-2 days a week IMO.

considering the major bucks that family carers are saving medicare / medicaid its high time that the govt compensated carers with at least some tax breaks. hospice is truly a great concept but they are paid a flat daily rate and will skimp on services if they can get by with it. in seven months i havent been offered a moment of respite. hospice evidently doesnt consider goin whorin a necessity..
im kidding. this place needs a laugh or two or were all going to self destruct..