Well, I very nicely asked my husband if we could talk, and then asked if we could set a time to go over a few things. I said we needed to write up some basic expectations, guidelines, a schedule and things and adhere to them because things were really falling apart. I said if we couldn't do this together I was going to have to ask him to leave. He said, "so basically if I don't do everything and kiss your *** I have to leave?" I said no, we needed to understand what needed to be covered and have it all laid out.

I had been dropped off at the Cancer Center that day and was done early. I called him at noon and asked him to call a few friends to see if he could get me a ride home. He immediately went to sleep and did not call anyone. The medical taxi was going to pick me up at the regular time at 3:30 but was very late and I did not get picked up until 4:45.

This was the end of my rope. I'd virtually waited in waiting rooms when I was too sick to sit up for 4-5 days in the last week and a half, because of him.

So he chose to leave. By the next day his mother had bought his ticket and he is flying to California on Friday. He didn't even want to try. He has no concern that he is leaving me alone with a sick 15 year old to take care of, never mind myself. He is headed out to sunny CA where his mother will wait on him hand and foot and isn't looking back.

Oh, Tracy, I'm so sorry. I wish there was something I could do to help.

Abby

I'm sorry you are in such a difficult place. Seek out information from local agencies or church groups to find out what kind of help you can get - for both you and your son. Also, now would be a good time to see if you can find back up for son's care in case you ever have to be hospitalized at some point in the future.

And as a one-time Ct. resident, I can tell you they are very agressive about child support - check with Family Services about what your son's rights are for financial support from his father.

Tracy, I'm very sorry but am glad you stood up for what you need. Good for you.

Now, as far as getting help . . . you can get an internist to set you up with a social worker to get some in home help. I am considering having to do that too. Do you have insurance?

There are state agencies that can help too. You are in CT, right?

http://www.ct.gov/dss/site/default.asp

There are ways to get help, even from schools. If it hasn't been cut, most schools have special education departments to help.

So there are ways but you are in such a bad place right now that someone will have to help you get it. You have to get better help for your MG soon or you won't be able to do anything.

I hope you can find people to help you out.

Annie

Thank you, I already have Personal Care Assistants and they are going to increase my hours, so I have inhome help for myself and housework, errands, etc. I put an ad on Craigslist looking for a young guy, preferably college student to move in and live rent free in exchange for 15 hours a week of work, mainly around my son. They would have to get him to and from school, be like a mentor to him, spend time with him, etc. I got two AMAZING responses both from UConn graduates that were amazing. Both had backgrounds working with special needs kids, tons of references, almost too good to be true. I felt much better after that. I will interview them this weekend.

My husband's entire SSDI check goes into our checking acct and will continue to do so because it is the same amount as our mortgage. He won't need any money out there, he will live with his mother and she will take care of him. He left last year for 3 months. There is nothing he needs money for, she has a car, house, and feeds him. The mortgage has to be paid, so basically his money will go in and then pay the mortgage. Mine will pay the second, and the other bills.

Luckily I already have services in place; it's just that I can't be here alone with my 15 year old who is also real sick with Lyme and about to start a serious treatment regimen including IVIG. If I get one of these guys to work out, I think we'll be okay, except that my house is a freaking disaster but with the pCA's help and being able to get out of bed again maybe that will start to change.

Only thing is, after I was gone all day yesterday to neuro I got home and he had totally changed his tune and said he wasn't leaving, he wanted to work it out and has been great ever since. I think my being gone all day gave him time to think??? Or all the snow, and him realizing how vulnerable we'd be, or that this was his home, it's a little exciting with all the storms, he was on the roof when I got home all charged up.

So now I don't know what to think. But he has been great now.

Perhaps he's 'great' because he sees how easily he can be 'replaced'. Sounds like you have made great progress in a short period of time to line things up for the better. Maybe a sunny vacation with Mom would be good for him after all!!

Just a thought!