now what?

I am beyond my stress breaking point at the moment.  Hospice has decided that Jaren is too stable to be able to stay on hospice so they are taking him off of the hospice program which is good that he is stable enough to not have hospice but what am I supposed to do? they are coming tomorrow to do the exit paperwork and he will have to give back his cane, and his walker, and he won't be able to get meds anymore through them.  I have researched taking him other places but they charge to much for care I would be working to pay for him to have care what a waste.  I am frustrated that when you leave hospice that they have to take everything away.  With MLD we fall through the cracks with so many other programs that I get so frustrated and angry that there is not more to help people in our situation.  Medicare is giving his pump supply place problems and not wanting to pay for his pump supplies because he is on hospice so I have been fighting with them because hospice will do nothing for his diabetes at all, he has not had supplies for his diabetes since December because of Medicare.  I am so tired of fighting with everyone about everything just to get something for him.  Now I have more on my shoulders because I will have no help from hospice, I will not call hospice again unless I absolutely need it I don't want to get help and then have them swipe it out from under us again, I can't do it this week has been an emotional roller coaster that I don't have time for or the patience for.  The diabetes supply store contacted me earlier this week also to let me know that he has to keep track of all of his blood sugars and there has to be at least 4 a day for medicare to keep the supplies, how on earth do they expect me to track it when he doesn't even take his sugars regularly because he can't remember how to take them or doesn't take them because he can't remember that he needs to take them. 

Soccer is starting this week also and the kids are excited but all I can think about it how am I going to do it all and keep the kids involved in activities? I just can't do it all, the kids might miss a week or two of practice because I can't be in forty places at once.  I will try my very hardest but I can only do so much before I shut down to a point where I can't function.  Hopefully when I get used to no help from hospice I will be able to get on a different schedule and be able to do MOST of it without having a breakdown.

I guess I have something more to learn with all of this stuff that is being thrown my way, sometimes I am just in survival mode and just keep going.  Sometimes I wish I could just have a spouse to talk to about things and not feel like I am talking to a child that doesn't understand anything I am talking about.  I just hope that I am learning enough that I will not regret any of the decisions that I have to make.  I want to be able to face my kids and say I am doing my best and I know you didn't have a "normal" childhood but look what great kids you have turned out to be because of the trials that we went through together.  Now that I have complained enough I have to go get him ready for bed so I can get some sleep to wake up and start all over again.