Last night's meltdown

YOU MUST GET REST
You need to get rest. PERIOD.
He needs to take a sleeping pill, anti-anxiety pill - whatever it takes to rest at some time that allows you to also rest.
Here's an activity you can do while you are awake... get on your computer and search "RESPITE CARE SERVICES".
I have spent many a night sleeping lightly when my mother-in-law was still ambulatory but beginning to sway and fall...I had to just go to bed remembering HER words...do what you can and leave the rest to God.
She is confined to a hospital bed now but I still have to exercise the self care necessary to allow myself to sleep. There have been a few nights where she has been agitated, restless and confused... a couple diphenhydramine do well enough to get her to rest and me, in turn, to rest.
Fatima

melt downs and no sleep
Michelle P,

I have walked this path and understand how the lack of sleep makes you only want to melt down and cry. I believe the lack of sleep all starts with the first stay we all face in the hospital,as the nurses come in every two hours and wake you whether need or not,part of their quote unquote job. After that, you as well as your spouse get on that same need for being awakened non-stop. For Sean,our last stay in the hospital,as he was having so much trouble sleeping the first few days there,I actually yelled at a nurse one night for waking him,as it was the first time he's slept in days,of course the staff was less thn happy with me saying they were just doing their job,I said well you've got all these monitors hooked to him,you can see at the station how he's doing,just leave us alone the rest of the night,if we need you we'll call as your not doing anything for him at this point I haven't been doing at home. Boy,was I ever hot that night.
As for sleeping in bed together and holding one another, Sean and I hadn't been able to really hold one another since May,however, as time went on,we would make time each time he was on his feet to hold one another,I would lightly place my arms around him and tell him you pull me as tight as you can with causing you pain,I'll just stand here,that was our answer. When the end was getting closer,no matter how much it hurt him,even laying in bed he would reach for me and hold me while I was standing by the bed.
On the sleeping together,or at least layingin the same bed,what little sleep either of us had,at first when we came home with his chest tube and drain box,he was worried about me and the dogs being in bed with him,therefore,I would go to the couch,we have a small one bedroom apartment,and he would call me on the walkitalkie if he needed me during the night. However,after about a week,he feared more being those few feet away from me,than me and the boys in the bed,and from that night on,we never spent another night not in the same bed,no matter whether the drain was still there or not or whether the CAD pump with chemo flowing was hooked up or not.
Even in the hospital,and you know how small those beds are,until the night of his first respitory attack,we laid together at night when everyone was gone,much again to the staffs dismay,as they would tell us this is why they brought in the recliner,however,to us it didn't matter as this was how close we were and remained. Once the big ari machine was hooked up,however,I could not sleep in the hospital bed at the hosptial with him,far to many tubes and wires hooked to him,therefore,I placed the recliner up against the hospital bed,and laid half on it and half on the bed,therefore, we were still touching at all times.
I know what you are going through with your husband not wanting you to sleep,as the last couple of nights we were in the hospital,even if I would leave the room for a couple of minutes,which I would always only leave when he was asleep and at that leave his cell phone by his hand so he could call me,he would wake without fail and ask were I went. Therefore,after this happening twice,I never slept nor left his side until the funeral home,three days later came to the house and took him away.
I can not imagine how our men feel and the feelings of worring about sleeping,as I believe in Sean's case,he worried if I fell alseep,I would not be there when the end came. In our end, there were no good byes as he had the second attack here at home only a few hours after coming home,instead of good byes,with a nurse hovering over top of us,his final words were help me,to which I had to tell him there was nothing more I could do. He kept wanting to take the oxygen mask off,which I kept holding on his face,watching the tears fall and begging for help,and all I could say is I am helping you and I love you. Sea lasted from this happening at 7 pm on Tuesday night until 8:30 Wedensday night before he passed. He passed quitly by taking one last breath as I laid by his side.

I hear you
My husband was diagnosed with GBM in Mar 09. Prognosis is poor. He is still able to walk (with some issues getting up from sitting position) but generally can still take care of himself. He also has some short term memory loss. However, over the last few months he has definitely become more "high maintenance". My mum and dad have moved in with us to help out as I work full time and we have 2 girls (3 and 9). Also, its reassuring for me that someone is home with him (just in case he has another seizure). However, he keeps asking me to get mum and dad to leave. He expects me to keep my full time job, run the house and kids and keep up with all his doctor's appointments because this is what we agreed to do for one another when we took our vows. I have explained to him that I am no superwife. This need to have me do all things and to be with me when I am not at work is a little unnerving at times. I used to have a coffee every Saturday morning with a girlfriend. Now I still go for the coffee but he always asks to come along. I think its part of their condition but like you I do feel like he's driving me over the insanity line some days.
Newbride, I read your post and can totally relate! Cycle 4 of chemo (Temodar tablets), on day 3, he decided he was not taking any more tablets (according to him the kids had been too noisy that day and he couldn't put up with it anymore). It was the illness and the meds talking, not the man I married so I screamed, threatened, and finally begged and he did end up finishing the course and continuing with further courses. I have been warned about behavioural changes and personality changes but some days its harder to cope with.
And stories about people who have survived it? Heard those too. My husband's sister keeps talking about her neighbour, a seven year survivor of another form of cancer and keeps saying how we should do what he did,go on a mediterranean diet. If only it were that easy! (PS hubby was in 8th year of remission when the current tumour hit)She also keeps asking why he is not on the same meds her neighbour was on and has told me she is disappointed with the way I have handled his care. This from the same person who rarely visits and even when he has been in critical care has taken over 2 days to come see him when she lives in the same town! You gotta laugh otherwise such people will leave you in tears! OK my rant is over.