Nancy, "what if" you stocked up on bottle water by the cases like my wife does??? We got bottle water in every refrig and I smash the bottles before I put them in the trash can!! We all try to drink 3 to 4 bottles a day since the heat index is 100 and better and now we can't go outside after dark or the mosquitoes will eat you alive and give you the west Nile virus!!

I'm glad Dan is doing better overall and you too, I still hope to host you two when you get to Texas in the RV and remember I got a hook-up, dump and parking platz beside my house! I really think once he see another survivor doing pretty good in his recovery he may have a mind set change how he operates his life!!

oh fred -- ive got plans -- believe me and at some poin they will include you.. i just gotta get to a place a little bit better in dans world -- its a slow ,slow process as you know, but i do have plans

Nancy, so sorry - yet another round. And it isn't like you aren't trying or on board to help. But what are you going to do, hold him down, plug his nose and pour the water in? Then have to worry about choking. It may come down to a PEG if this does not resolve.

Since Bruce has no movement in his right arm, I could drop an IV into the left after I tied it down. Of course, Bruce would probably just pull it out with his teeth.

I do not mean to make light of this - you know that. But maybe a laugh or grin will help. This throws your whole week off. Plus the apprehension. And the work the days following. I don't know how you do it. Bruce was off-schedule for 24 hours after the oral surgery, but when I got home this afternoon, said, OK Mister, back to front and center.

Please know I am thinking and praying for both of you and do let us know. Debbie

yep he messes around with the dehyderation, the seizure threshold gets lowered, the bowels get all messed up..and he hurts.... and it is all things he does to himself....he ate a small salad this evening after i told him tomorrow he was going to the ER - by ambulance if needed ( not cooperating) ... but in truth it is hard to help someone who is so self destructive... how do you feel sorry for him when his stomach pain is self induced to a point.... i hang on to the fact the cycles seem to be shortening and he comes out of the moods quicker..but my patience is wearing thin... I play by all his "rules" drive pathetically slow, avoid every pot hole and man hole to the point of ridiculousness, the anal- ness of his cleaning/supervising my cleaning and the tantrum that comes when it does not work out... the tantrum is "OK then" he says- "go home, one more time,go home"..and the refusal to eat... some days i wish i could drop him off at the nursing home for a day for a week..maybe he would appreciate his home life...UGGHHH. whinning wont and dont help so i'm gonna shut up and quit writting..nancyl

There is a good argument here for Daycare, either at a center or in your own home Nancy. After all if he is manipulative and mean already how much worse would he be if he went out for the day and you actually took some time off and relaxed for a while. At least you would be able to cope better if you had some mental and physical time off.

And it is amazing how well they act in public compared to the way they act at home.

Debbie is right, he will have to be hospitalized and have peg feeding if this goes on. His doctor will order it or he/she would here, as self-starvation is considered the same way as suicide is, not illegal but not a good way for a person in their right mind to act. Therefore they come under the Mental Health laws.

For you it is a real Catch 22 and I hope you find some way of resolving it.

Sue.

Nancy I just don't know how you do it. I would go insane if Mike acted this way. He did go through a time when he would not eat but it was due to the extreme nausia he was experincing not because he was trying to inflict pain on himself. I wonder, and I think you have said this before, if it is a control thing on his part. The only thing he has left that he can control is his eating and drinking so therefore he does this just to show he does have control over "something" in his life. I will be praying for you and Dan! ((((((((((((((((((HUGS))))))))))))))))))).

yes the peg tube is a possibility for certain -- lots of hoops to jump through to get that..ironically taking him to an ER to be hyderated is "evidence" it needs to be done..... i guess in the medical field it is a question of ethics so we need evidence of it being necessary...

once i can get settled at the condo in town it will free me up so much----- i will be able to have breaks from him and he from me.. i'm sure he gets sick of the constant "supervision"...i wish things would have worked out to the point of being able to stay but that wasent in the cards... no matter what unless i dump a lot more money into the place to make it more accessible -- it is just not gonna work as i and dan age.... we are minimally assesible according to the PT who has evaluated our place..well if ior anyone else am gonna care for dan it needs to be assesible NOT minimally..have a good day everyone..

Nancy, I also just don't know how you do it. It has to be soooo frustrating. Have you told him that if he keeps this up he will have to get a PEG tube put in? Maybe that will be enough to make him stop. If not, then I think Sue's suggestion of daycare is something you should consider, if for nothing else but to maintain your own sanity. Just one or two days a week. It will be good for you to give you a break and good for him to maybe realize that it is wrong of him to purposely put himself AND you through all the extra medical situations unnecessarily. It also may make him appreciate his home life enough to make him stop the behavior.

I don't know what the answer is but I think you DO need to do something before you "break"; as most people would have already....long ago. I know I would have. You are such a strong and loving woman and I admire you immensely. I will keep you and Dan in my prayers.

Dena

Nancy: you know I am working on Bruce staying alone for a bit. Everything in the main house is accessible to his WC. Transfer to toilet is scary, but we work on it every day. And personally, while Bruce can use the urinal himself - takes some time, he has to let go of the grip bars several times, but he has done it-personally, he will sit and wet himself all day.

However honey, that said, now that we have two weeks working at leaving him alone, can't tell you the relief I have. I can take a true walk and not stick to the street, I can go and have a coffee. Mostly I go to work, but he finally understands that while this is a step towards independence for him, it is also some time for me. And now that I know he is as safe as I can make it, will not hesitate to go. Too early to have any change in his behavior, but he is sure thinking about it. Debbie